there to support each other. They share triumphs and
share heartache.
CHDs are the world's number ONE birth defect...
And the world's number ONE birth
defect KILLER.
- 1 in 10 CHDers will not be diagnosed till they have
already passed away!
-4,000 CHDers in the U.S. will not live to see
their 1st birthday
-Thousands more will not make it to adulthood
and thousands more will die before the age of 40
This is a HARSH and SCARY reality for CHD parents,
Adults CHDers like myself, Spouses/partners of Adult
CHDers,CHDers friends and family. I KNOW something
could happen that is why I LIVE my life to the FULLEST
I possibly can!! I try to make no excuses why... I may
have "half a heart" (one of the severe CHDs), but I will
NOT let it stop me from LIVING... as what is the point of
all the HARD emotional and heart-aching journey my
parents went on for me to be here!!
I OWE it to everyone to LIVE...
and you know what?!?!...
EVERYONE heart healthy or not should LIVE to the
fullest... make every day, every moment COUNT!!
I have many personal heroes.... but on my list of heroes is
ALL CHD Angels. The CHDers young and old who have
fought a long, hard, and brave fight; who are amazing
and inspiring... and who have left a legacy.
**Here is one song I love and I dedicate this song to all
CHD angels (young and old):
Here are just three Hero stories (get out some tissues)...
Let's keep there memory alive and spread CHD Awareness:
Faith's Story:
I am the luckiest Mom ever.Faith was and always will be the most amazing little girl that ever lived and my husband and I consider ourselves to be so blessed to have been her parents.Faith could light up a room with her smile and made it her personal mission to make everyone she came in contact with laugh.She was more compassionate and loving than any other two year old I’ve ever met and our lives are better for having known her.
My pregnancy started out blissfully normal. I had no morning sickness, gained very little weight, felt great. When we found out we were having a little girl in May of 2008, we were thrilled. When I went back to my doctor two weeks later, she said they were concerned the baby might have clubbed feet and to go see the high risk specialist but that it was no big deal. The high risk doctor was going to be on vacation for a couple weeks and , since we were told it was no big deal, we scheduled the appointment for about 4 weeks later when I was 26 weeks pregnant. We never, ever thought there would be something wrong with our little girl and saw it as another opportunity to get more pictures of our little princess.
On June 24, 2008 we went to the high risk specialist and our world turned upside down. The ultrasound took forever and then the doctor told us he thought the baby was missing part of her heart. He said in his career, he had only seen one other case like ours, of a woman who had been in a few weeks earlier. The doctor called a friend of his down at Columbia University Medical Center in New York City who set us up to come down the next day to be evaluated by another doctor. The drive to my parents’ house from the doctors was horrible. We couldn’t’ stop crying, couldn’t believe what was happening. Couldn’t believe that the baby that we wanted and loved so much had something so major wrong with her. Telling my family that day was one of the hardest parts of this journey since they too loved her and were so excited over another granddaughter, another niece. It was awful but we remained hopeful that maybe things were not so bad, maybe the doctor was wrong.
My parents went with us to Columbia the next day for the first of many appointments and tests. I kept hoping there was some misunderstanding but when we finally sat down with the doctor and she gave us the news….we were devastated. Our baby was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS affects 1 in 50 thousand babies and is the most severe Congenital Heart Defects (CHD). In HLHS, the left side of the heart is either severely underdeveloped or non-existent and is 100% fatal without intervention. In our case, one chambers was completely missing, the other was so tiny it was useless and there was significant narrowing in the veins. We were given three options: late term abortion (only done in 2 states after 24 weeks pregnant – not ever a real option for us); compassionate care (let the baby die of natural causes within the first week of life); or a series of three open heart surgeries designed to redirect the blood flow throughout the body. After having an amniocentis done to rule out any chromosomal deficiencies that would make the baby ineligible for the surgeries, we decided the only real option for us was the three part surgeries.
The day the baby’s heart condition was diagnosed; naming her became our top priority. All the names we had been considering just felt inadequate now. We wanted her to have a name with strength and power to it and decided on Faith Margaret. Faith to give her strength, Margaret after my mother, grandmother, and great-grandmother. It was the perfect name for our little warrior.
Knowing our daughter was going to have a bumpy road ahead of her changed the rest of my pregnancy. I was scared of everything. I would buy an outfit, then panic and not do anything for days after. I was so afraid we were going to lose our little girl before we even got to meet her. I couldn’t bring myself to set up a nursery but had a baby shower both before and after she was born (one before as proof of our belief our little girl was going to be ok, one after her first surgery as a celebration of how well she was doing). I would cry for no reason and wanted to keep her inside of me forever, where she was healthy and thriving. We had to move to New York City two weeks before Faith was scheduled to be induced to ensure that she would be born where we wanted her to be rather than the local hospital. Everything I had planned for went out the window when Faith’s heart was discovered.
I was admitted to the hospital on Sunday, September 28 and induced for delivery on Monday. Faith, however, had plans of her own and was ultimately born on Tuesday, September 30, 2008 by c-section. We didn’t get to hold her, though they did take pictures of her before whisking her away to the NICU to be hooked up to different machines. My husband got to see her that afternoon but they wouldn’t let me go to her until almost 12 hours later. By this point I was in full fledge panic and all I wanted was to see my little girl for the first time.
We didn’t get to hold Faith until she was three days old because of all the wires and things she was hooked up to but spent hours at her bedside, talking to her and touching her. She had her first surgery when she was 6 days old (the Norwood). This surgery put in a temporary shunt to hold open the PDA in her heart until she was big enough for the second surgery. The surgery went well but that night, fluid starting building up in her chest and Faith’s oxygen levels dropped causing her to crash and have her chest reopened. We rushed back to the hospital at 3 AM but by the time we got there, she was stable. Faith’s chest was open for the next couple days while her body adjusted. She finally was able to come home after three long weeks in the NICU, just in time for Halloween.
Faith thrived at home. She wouldn’t take a bottle and had to be tube fed but was such a happy little baby. She had her second open heart surgery on February 12, 2009 and had no major issues. The Glenn operation removes the shunt and redirects the blood flow in the top half of the body. We were home in 2 weeks and Faith bounced back immediately at home. She continued to thrive, meeting all milestones and making us happier than we have ever been.
On July 21, 2009, Faith went back to Columbia for a catheterization. Things did not go well. They found that her right pulmonary veins were very narrow and didn’t give us much hope. For the first time in her life, we had to face the very real possibility we would lose our little girl. The doctors were grim, giving her at best 50/50 odds of having the Fontan surgery but they really didn’t have a plan as to how to treat the veins other than to pray they grew. We were devastated but were not going to give up on the love of our lives.
With the help of our pediatrician and cardiologist, we found out Boston Children’s Hospital had an entire department devoted to kids like Faith. Armed with our parents, my husband and I took Faith up to Boston in December 2009 for a variety of tests. When we met with the doctor, she said Faith had Pulmonary Vein Stenosis. Pulmonary Vein Stenosis is an extremely rare condition with little research done on it. Cells grow within the vein and stop blood from being able to flow from the heart to the lungs. A lung scan showed that Faith was getting less than 1% blood flow to her right lung and there was a very real chance of her losing use of that lung. We were scared but the doctors were very confident that putting Faith on an experimental chemotherapy called Gleevac could stop the stenosis. Like cancer, cells were growing where they shouldn’t be and the Gleevac was targeted to destroy these unwanted cells. Faith had a cath done on December 21, 2009 to see if she’d be eligible for a surgery that would restore use of her right lung. We were the only people rooting for Christmas in the ICU because it would mean Faith would be eligible for surgery. The cath was a success and Faith had her third open heart surgery on December 23, 2009. This surgery was successful, we were thrilled! We spent a week and a half in the hospital after this surgery and took Faith home, armed with Gleevac and a plan. We were so confident this medicine was going to save our little girl.
2010 was a year filled with hospital visits for us. Once a month my mom and I would take Faith up to Boston for a sedated echo and lung scan and to evaluate the effectiveness of the Gleevac. Things were overall, positive. Faith was responding to the medicine and her stenosis was becoming manageable. She had two caths during the year, both of which were successful and Faith continued to amaze us in every way. She was such a talker! She had more words than any other two year old I’ve ever met and LOVED to snuggle. She was a late walker and always preferred to be carried but she could do it and would get this little devil grin each time she succeeded.
After Halloween, things began to change. Faith began to retain fluid in her face and stomach. We asked all of her doctors about it but no one seemed concerned or have any thoughts on what was causing it. In early December 2010, her doctor decided another cath was in order to see if they could find out what was going on with the fluid. We scheduled the cath for January 3, 2011.
On Saturday, December 18, Faith started randomly screaming and complaining her tummy hurt. Her stomach was very large and distended. She would wake up in the middle of the night screaming but I would go in and give her a drink and rub her tummy and she’d go back to sleep immediately. On Tuesday, both Faith and I were exhausted so I called the pediatrician, cardiologist, and GI doctors. Her pediatrician finally got back to me late that evening and suggested I take her to the Emergency Room at Yale-New Haven to rule out an intestinal blockage. After a few hours in the ER, we were discharged saying to give her Maalox.
Wednesday, Faith was very sleepy but I thought it was just because she was so exhausted. No one had been getting much sleep so I thought it was just catching up with her. Her pediatrician called around 3 to see how things were going and I said they were the same, Faith was still screaming, still complaining. He suggested I bring her in to see him at 5:15. At 4:45, my mom and I got her ready to go. Faith was fine, she was talking, acting like a sleepier version of Faith but nothing major.
Something happened on the ride over to the doctor’s office. I don’t know what. She was grunting in the car but I couldn’t see her because it was dark out. We got into the lobby and she didn’t look right. I was so scared. Her eyes were rolled back and she was nonresponsive to me. I thought she’d had a stroke and we quickly hurried upstairs to the office. When we got in the office, she seemed to snap out of it a bit and cried when I got her undressed, sat on the scale on her own. I started to think maybe I’d imagined it. The nurse left us and almost immediately Faith’s back gave out and she started turning blue. My mom ran and got the doctor and they came in and started working on her. I was holding her when all of a sudden she stopped breathing and I felt her little soul leave her body. They kicked me out of the room to work on her while they were waiting for the ambulance. I went to my mom but I knew in my heart she was gone. It is a feeling I can’t describe other than to say I literally felt her leave me, I knew she wasn’t coming back. We were rushed to the ER and they worked on her for over an hour before it was time to let her go.
Our world has been turned upside down since December 22, 2010 when we lost our little princess. Nothing is the same without her here. We are so blessed to call ourselves Faith’s parents and consider ourselves lucky to have known and loved her.
Being on the CHD roller coaster has had its ups and downs but all in all, we are better people since she was here and we wouldn’t trade her for the world. We had our second child, a heart healthy baby girl on June 21, 2011. Hope Margaret looks just like her big sister and has so many of Faith’s personality traits. We always said that if she has half the personality and spunk of Faith, we will be twice blessed as the luckiest parents there ever were and so far, that’s proving true.
Faithy truly loved the world and the world loved Faithy but we know she dances with the angels now and lives forever in our hearts.
Corbin's Story:
At our routine 20 week ultrasound, the doctors found something wrong with our baby's heart.We
were sent to a specialist for fetal echocardiograms. During that visit, we learned that our baby boy had
a Congenital Heart Defect (CHD), a fatal heart condition called Hypoplastic Left Heart Syndrome.
Basically, he had only half a heart. These were the options we faced: have a late-term abortion; offer the baby only comfort and care after birth and let him pass away within hours;place our baby on a heart transplant
list and await a donor; or find a hospital that would perform experimental surgery to try and save his life.
The last option meant immediate heart to enable it to function with only one ventricle. That surgery would be the first in a series of three open heart surgeries over a course of two years. Needless to say, the situation was overwhelming and the and the decision daunting.
We immediately knew we would try and save our son's precious, God-given life and began immediately searching for a hospital. We chose the hospital at the University of Michigan and traveled to Ann Arbor to give birth to our son, whom we named Corbin. After much prayer, we chose the three-surgery option. Just three days old, Corbin had his first open heart surgery.
Corbin was released from the hospital several weeks later. What joy it gave us to bring home our little baby boy! But, as thrilling as it was, it was equally frightening. He was outfitted with a feeding tube that ran from his nose to his tummy. He needed to be fed every two hours. He also took five different medications for his heart.
We adjusted well and life was good, but then things went terribly wrong. Corbin was losing weight and was very blue. One evening we rushed Corbin to the emergency room because he was not responding. Once there, they rushed him into the operating room to perform a heart catherization to take pictures of the inside of his heart. They found he was not getting enough oxygenbecause his heart was not functioning properly. He was placed on a ventilator to help him breath and was flown by life flight back to Michigan.
Corbin was very ill. After weeks of testing, we learned that Corbin had developed a blood disorder from the way they had re-routed his heart. It was critical that he have another surgery as soon as possible. His second heart surgery wasn’t supposed to take place for another three months, at the soonest, so he would have a chance to heal and grow. But, events superseded this initial plan and, at 8 weeks of age, we once again watched our son go off for heart surgery. After 7 hours in the operating room, we learned that Corbin was critical and would be in the ICU in a few hours. Three hours later, we were able to see him.
That evening, Corbin’s heart stopped and he was rushed down for his 2nd emergency heart catherization. His heart was just giving up. Atmidnight, Corbin was placed on an ECMO (extracorporeal membraneoxygenation) machine that pumped his heart and oxygenated his body for him. The goal was to enable his tired, tired body to heal and rest.
Corbin never stabilized, however, despite the rest the ECMO provided. So, at 10 weeks of age, the doctors decided to try another time to repair and re-route his heart. We watched, again, as our precious boy was wheeled into the operating room. After a grueling 9 hours in surgery, Corbin was taken off the external heart and lung machine. We were so excited to learn that he was brought up to the ICU with his own heart doing all the work!
Corbin began the slow process of healing. But, one morning we arrived at ICU to learn that Corbin had once again taken a turn for the worse. He was rushed down to the heart catherization OR. We learned that some of his arteries were closing off. And so, we watched the doctors take Corbin to his 4th surgery--in only three months.
How very difficult it was to see him go through so much and fight so hard. We questioned if we were doing the right thing. But then Corbin showed us how strong he was. He immediately bounced back and finally came off the ventilator and began breathing on his own. We were so relieved to see such progress.
But as time went on, we learned that Corbin was draining fluid from the tubes in his chest. He was losing important proteins and fats to help his body heal. So after a long discussion with the team, Corbin went in for his 5th surgery. This time, instead of operating through his chest, they entered through his side to stop the bleeding, clear out his chest cavity, and give him a faster recovery.
At six months of age, Corbin was finally ready to come home again. He was still a very sick little boy. He flew home with a pump that fed him constantly since he was still unable to suck or swallow without it going into his lungs. He was on oxygen for his lungs and to keep the pressure in the arteries to his lungs down. His medications were many and overwhelming--he was on 21 different medications given over 60 times a day. And, even though he was six months old, he was developmentally at a newborn level.
During Corbin’s hospital stay, Travis' job transferred us from North Carolina to Virginia, a move which positioned us better financially to handle the looming medical bills. We found a great medical team in Virginia and Corbin made amazing progress. He dropped to only six heart medications daily and needed oxygen only at night. Further, Corbin made great strides developmentally. He learned to eat completely on his own, a skill we wondered if we'd ever witness since he spent so much of his life on a feeding tube.
We were so enjoying life with Corbin, which had become relatively stable. But April 2006 started a new chapter. It was then we faced another surgery to repair Corbin's heart. On April 13, 2006 Corbin went in for his 6th open heart surgery. We prayed it would be his last for years to come. He went in physically strong
and the odds were fairly good.
The surgery went perfectly. But on the elevator ride from the OR to ICU Corbin’s heart stopped. When we finally saw him, he was critical and bleeding badly from the chest compressions performed to revive him. There was nothing left to be done but wait.
Amazingly, he responded over the coming week. We were down graded from ICU to general care and were overjoyed. But, within an hour ofleaving the ICU, Corbin's heart stopped while he was in my arms andbegan bleeding profusely. He was rushed back to ICU. We learned after several hours that they could not get his heart to function again. Corbin was once again placed on the ECMO to keep his body alive. Again, the hope was to enable him to rest while allowing the surgeons to determine a course of action. Meanwhile, his need for donated blood was very high; he used over 500 units in just three days. The chest compressions performed to save his life damaged the walls of his chest cavity, causing intense bleeding. They needed to operate again to stop the bleeding or he would not survive.
They stopped the bleeding and we were overjoyed! He remained on ECMO for three more weeks. Then, we celebrated again as he was downgraded from ICU to a unit requiring less care. But our hopes quickly faded when, within days, we learned Corbin was not getting any blood flow into his left lung. This would require intervention once again.
After reviewing many options, it was decided to attempt a heartcatherization to open the artery. Thus, Corbin was wheeled away for his 10th heart catherization surgery. During the procedure, complications arose and they lost two of the stents that would have opened the artery. Those stents had to be removed from his heart. So Corbin was taken for emergency surgery to remove the stents and repair his heart. Although they worked for 12 hours, the doctors were able to remove only one stent. The next day, they performed his 9th open heart surgery to remove the final stent.
It was during this surgery that a major complication arose. Corbin wasplaced on a heart lung pump during surgery and a blood clot passed through to his brain. This caused major bleeding in Corbin's brain.Corbin never awoke from his last surgery. On June 29, 2006, Corbin passed away after an amazing fight.
We miss Corbin greatly. But we are grateful to God that He gave Corbin to us, even though it was only for a short 23 months. In his brief life on earth, Corbin taught many big lessons. He taught us perseverance. He taught us to find joy in pain and suffering. He taught us what it means to sacrifice for loved ones. And he taught us to cling to God in prayer.This was God's plan for Corbin's life, and ours, and God faithfully is guiding us through this trial, for He never leaves us nor forsakes us. Praise be to God.
Soren's Story:
My husband Scott and I found out we were pregnant with baby # 4 in April 2007. We were so excited to find out that we were having another boy. We decided on the name Soren Blake Shafer. Two boy’s two girls! How perfect! I had a rough pregnancy. I was sick all the time. I had lost about 26 pounds during the pregnancy and the doctor wanted to make sure the baby was big enough. So at 30 weeks we went to a high risk specialist to check the baby’s size. He was in the 95th percentile. The ultrasound took what seemed to be a long time. When he was done he said very compassionately, I wish I had better news for you. Your baby’s heart does not look normal. I was in shock. I said, that can’t be right, we are here just to see if he is big enough. I can’t remember much after that. I remember they said it would be wise to do an amino test to check for chromosome problems. I did not know what to do. I had gone to the appointment with my mother so she could see the baby. I really did not think any thing would be wrong and I was just happy to get another sonogram. My husband was at work. My mom called him and told him what the doctor had said. I was so upset I could not talk or think straight. We made plans to go to have the amino test later that day. We went for the test and when we received the results back it was negative for any chromosome problems.
The high risk doctor made me an appointment to see a cardiologist. At the appointment they did a fetal echo cardiogram. After they were done they asked us to wait in another room. Not too long after the Doctor came in. He said your baby has Hypo-Plastic Left Heart Syndrome. He explained to us that the left side of his heart was so underdeveloped that it was of no use. With out treatment there is no chance of survival. There are 3 options, Compassionate care, where we would just keep him comfortable and spend what time he had with him, Open heart surgery in 3 stages, the Norwood, the Glen and the Fontan, Or a transplant. We were told that even the treatments could not guarantee anything. But we were given hope that he could live. So we left and had a lot to think about and discuss. In our minds we only had two options. God has given man the knowledge to help us. He tells us how precious life is. I believe we should do what we can. So we were left to talk about the 3 stage surgeries or transplant. We decided to go with the 3 stage surgeries. It was the recommendation of Soren’s cardiothoracic surgeon.
We had many appointments with cardiology to prepare for his birth. His heart was on the wrong side of his body and backward. It was hard for the cardiologist to tell what was what because every thing was backward and so many of the connections to and from the heart were in the wrong places. We were even told at one point he had hypo-plastic right heart syndrome, because every thing was so backward they thought the right was left and the left was right. That was once again changed back to hypo-plastic left heart syndrome. We also found out that he had double outlet right ventricle and pulmonary stenosis.
My OB care was transferred to the high risk ob team at Loma Linda. I began to have monitoring and ob visits there. I was monitored twice a week at Loma Linda and twice a week in Apple Valley. I was given and induction date of Jan 3rd 08.January 2nd came and I went in for an amino test to check to make sure his lungs were mature. If they were the induction would go as planned for the next day. As they were doing the scan for fluid they saw that there was none. I needed to have the induction that day. I was also having some contractions on my own and was also dilated to 3cm. So everyone was called, and everyone came down to the hospital for the birth.
The induction started with an IV and a medication called pitocin. I began to have more contraction but they were very weak. I went all day having these really weak contractions. They were giving me as much pitocin as they could and nothing really was happening. At 6 pm they broke my water. At 6:14 pm Soren Blake Shafer was born. He weighed 7 lb 9 oz and was 19 in long. The NICU team started their work. They stabilized him and took him to the NICU. It was 12 hours before we were allowed to see him.
When we went to the NICU to see him it was so surreal. We were showed how to scrub in and we had to put hospital gowns on. After we were scrubbed up we were taken back to him. He looked so perfect. To Look at him you would never know how sick he was. He had many lines. He had lines coming from his bally button and IV’s in his arms. He had heart monitors and monitors to check his oxygen saturation. It just seemed like so much for such a little guy.
He was being given a medication called prostin so keep a duct open in his heart that normally closes after birth. If this duck closes he has no way for his body to get any oxygenated blood, so this medication was needed to keep him alive. One of the side effects of this medication was apnic episodes. Soren would forget to breath. This was happening very frequently so he was put on a ventilator. It was hard to see another tube in him but it was needed. It also made it so we could not hold him much.
The doctors and specialist came together and had a conference to decide what was the best way to treat Soren and how and what to do in surgery. Surgery was scheduled for January 11th. Soren was having the Norwood procedure.
Meanwhile I had become ill. I was admitted back to Labor and Delivery with preeclampcia. I did not even know you could get it after delivery but found out you can develop if for up to six weeks post partum. I was there a couple of days. I was getting better and was released. That same night I was rushed back in severer pain. They took me back to Labor and Delivery assuming that is was a complication of delivery. They spent the whole day doing tests and could not figure out what was wrong so I was sent down to the E.R. The E.R ran tests.
This was the morning of January 11th. I was still in the E.R and Soren was going into surgery. The E.R let me go and hold him and say good-bye before they took him back. While he was in surgery, all my tests came back. I had kidney stones. I was so relieved that it was not something worse. I was given pain meds and told what to do. I was released tat the same time we received the call telling us Soren was out of surgery. I was so glad he had made it through surgery.
As soon as I was released we went to his room. He had been in the NICU before and after surgery he went to the Pediatric Cardiac Intensive Care Unit. Soren’s kidneys were not functioning after surgery so he had to be put on a mild form of dialysis. After a few days his kidneys were functioning again so he was taken off the dialysis.
We went to the desk and were showed to his new room. I was shocked at what we saw. I don’t know what I expected him to look like but this was the first time he really looked very sick. I just cried. He was so swollen and he really looked like he was dead. It was so hard to see him like that. It was difficult to deal with, but we were so grateful that he was alive and now we were focusing on getting him better. Soren’s kidneys were not functioning after surgery so he had to be put on a mild form of dialysis. After a few days his kidneys were functioning again so he was taken off the dialysis.
Soren continued to get better each day. He was looking like him self again. He looked beautiful. On January 17 I received a call that they were going to take him of the ventilator. I was so excited. I rushed back to the hospital and there he was. Not a single tube going in to his face. I had missed seeing his beautiful face with out all the tubes. We were able to get so many beautiful pictures. That day the occupational therapist came in to see where he was as far as learning to take feeding by mouth. He had never had anything by mouth so he did not know how to suck. But he was doing so well, we were told he would be coming home soon. He just needed to learn to eat. He was going to be worked with to learn how to feed. The next day January 18th, a NG tube was put back in to feed him while he learned to eat. I had been pumping my breast milk for him so he began to get breadstick through the NG tube. His sisters were able to come for a visit. His brother Brayden had a cold and could not visit. It was wonderful. The girls held him and kissed him and just loved being there with him. They could not wait for him to come home.
On January 19 around 4:00 am I received a call from the PCICU that they had to put Soren back on the ventilator. I had heard many times that sometimes if they are taken of too early they might have to be put back on it. I just figured that was what happened. I knew that it was one step forward two steps back, with all these heart babies. So that morning I got up and rushed to the hospital to see him.
I got to the hospital about 7:00 am. I went to his room and took one look at him and knew something was wrong. He looked very sick and did not even open his eyes. I stayed with him for a while and kept telling his nurse he does not look good, something is wrong.I had been staying at Ronald McDonald House, Loma Linda. I went back there to get something to eat and meet my husband who was coming down from where we live. We both went back to the hospital and he was shocked to see how much worse he looked. Soren belly was so swollen and it had become ridged. I asked his nurse to get a doctor in there. All day I had bee told that the doctor would be coming in to check on him during rounds. I did not want to wait anymore. His nurse told me it was probably air in his belly from being bagged when he had coded during the night. I told him I just could not imagine how uncomfortable that must be for him. I know when I get even a little bit bloated I feel awful. Can you imagine how much that must hurt to have so much air that your belly is so distended and hard! He got the doctor for me and the doctor looked at him and told his nurse that they need to use a machine that has a gently suction to suction his stomach. I was glad something was going to be done. We had to leave so they could do it. We went back to Ronald McDonald House. We had not been gone long and got a call to come back to the hospital. We were met by the Pediatric surgeons‘. We were told they need to do and emergency abdominal exploration surgery because they were very concerned about what they had found while doing the suction and an x-ray had also been done and it did not look good. We were told it would be about 2 hours. The baby in the room with him and had a similar set back where a part of his bowel had died and it had to be cut out. But he had come through it was doing ok. I was thinking this was the same thing. I was worried but not too much. I thought they would just fix it and he would recover. We decided to get something to eat as we had not eaten yet and knew we would not want to leave once he was back form surgery. We picked up a sub to eat and went back to Ronald McDonald house. We walked in to our room to eat and the phone rang. It was the PCICU. They asked us to come back. It had only been a half hour since we left and we were told it would take a couple of hours. I asked how he was doing and the lady on the phone told me the doctor would talk to me about everything when we got there. I knew it must be bad when they would not tell me how he was.
We got to the hospital and went to his room. Soren was in there, but the other baby was gone. I thought that was strange but I was so happy he was in there and he was alive. I had begun to think maybe he did not make it through surgery when they would not tell me how he was.
The surgeon came in, and told us, his heart was not able to get enough oxygenated blood to his digestive organs and everything had died. There was nothing more they could do for him. He was going to die. I was devastated. I could not believe there was nothing they could do. I told them can’t you do something! This is my baby! God gave him to me because he wanted me to have him! I even asked if they could take mine and give it to him. Anything to save him. All they could say was they were very sorry but there was nothing they could do. We called our family and every came. My Mom and Dad had already been on there way when I called to tell them he was going into surgery. So they got there and they called everyone else and had everyone come to say their good-byes. My parents, my sisters, my sister Lisa’s boyfriend Richard, By brother John, a dear family friend Heather, my good friend Randa, who also had a baby in the hospital and was staying at Ronald McDonald House, and our children Allison, Jocelyn and Brayden ala came. We all took turns holding him. We were able to take our only family picture that night. We prayed and cried. At 4:10 am on January 20th, Soren Blake Shafer died in my arms.
I miss my Beautiful Baby. I will never forget you Soren. Never was there a baby more loved or wanted. You were a remarkable little boy. In just 17 days you completed what God sent you here for. You did what takes most of us a lifetime in just a few short days. Even God knew how special you were and called you home. I love you so much.
**PLEASE tell ONE person about Congenital
Heart Defects!!! Just ONE!!!
I DARE you!!!**
~~~~
Connected By Heart ~ Day 3 ...Scary Reality
Connected By Heart...
The Congenital Heart Defect community is always
there to support each other. They share triumphs and
share heartache.
CHDs are the world's number ONE birth defect...
And the world's number ONE birth
defect KILLER.
- 1 in 10 CHDers will not be diagnosed till they have
already passed away!
-4,000 CHDers in the U.S. will not live to see
their 1st birthday
-Thousands more will not make it to adulthood
and thousands more will die before the age of 40
This is a HARSH and SCARY reality for CHD parents,
Adults CHDers like myself, Spouses/partners of Adult
CHDers,CHDers friends and family. I KNOW something
could happen that is why I LIVE my life to the FULLEST
I possibly can!! I try to make no excuses why... I may
have "half a heart" (one of the severe CHDs), but I will
NOT let it stop me from LIVING... as what is the point of
all the HARD emotional and heart-aching journey my
parents went on for me to be here!!
I OWE it to everyone to LIVE...
and you know what?!?!...
EVERYONE heart healthy or not should LIVE to the
fullest... make every day, every moment COUNT!!
I have many personal heroes.... but on my list of heroes is
ALL CHD Angels. The CHDers young and old who have
fought a long, hard, and brave fight; who are amazing
and inspiring... and who have left a legacy.
**Here is one song I love and I dedicate this song to all
CHD angels (young and old):
Here are just three Hero stories (get out some tissues)...
Let's keep there memory alive and spread CHD Awareness:
Faith's Story:
I am the luckiest Mom ever.Faith was and always will be the most amazing little girl that ever lived and my husband and I consider ourselves to be so blessed to have been her parents.Faith could light up a room with her smile and made it her personal mission to make everyone she came in contact with laugh.She was more compassionate and loving than any other two year old I’ve ever met and our lives are better for having known her.
My pregnancy started out blissfully normal. I had no morning sickness, gained very little weight, felt great. When we found out we were having a little girl in May of 2008, we were thrilled. When I went back to my doctor two weeks later, she said they were concerned the baby might have clubbed feet and to go see the high risk specialist but that it was no big deal. The high risk doctor was going to be on vacation for a couple weeks and , since we were told it was no big deal, we scheduled the appointment for about 4 weeks later when I was 26 weeks pregnant. We never, ever thought there would be something wrong with our little girl and saw it as another opportunity to get more pictures of our little princess.
On June 24, 2008 we went to the high risk specialist and our world turned upside down. The ultrasound took forever and then the doctor told us he thought the baby was missing part of her heart. He said in his career, he had only seen one other case like ours, of a woman who had been in a few weeks earlier. The doctor called a friend of his down at Columbia University Medical Center in New York City who set us up to come down the next day to be evaluated by another doctor. The drive to my parents’ house from the doctors was horrible. We couldn’t’ stop crying, couldn’t believe what was happening. Couldn’t believe that the baby that we wanted and loved so much had something so major wrong with her. Telling my family that day was one of the hardest parts of this journey since they too loved her and were so excited over another granddaughter, another niece. It was awful but we remained hopeful that maybe things were not so bad, maybe the doctor was wrong.
My parents went with us to Columbia the next day for the first of many appointments and tests. I kept hoping there was some misunderstanding but when we finally sat down with the doctor and she gave us the news….we were devastated. Our baby was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS affects 1 in 50 thousand babies and is the most severe Congenital Heart Defects (CHD). In HLHS, the left side of the heart is either severely underdeveloped or non-existent and is 100% fatal without intervention. In our case, one chambers was completely missing, the other was so tiny it was useless and there was significant narrowing in the veins. We were given three options: late term abortion (only done in 2 states after 24 weeks pregnant – not ever a real option for us); compassionate care (let the baby die of natural causes within the first week of life); or a series of three open heart surgeries designed to redirect the blood flow throughout the body. After having an amniocentis done to rule out any chromosomal deficiencies that would make the baby ineligible for the surgeries, we decided the only real option for us was the three part surgeries.
The day the baby’s heart condition was diagnosed; naming her became our top priority. All the names we had been considering just felt inadequate now. We wanted her to have a name with strength and power to it and decided on Faith Margaret. Faith to give her strength, Margaret after my mother, grandmother, and great-grandmother. It was the perfect name for our little warrior.
Knowing our daughter was going to have a bumpy road ahead of her changed the rest of my pregnancy. I was scared of everything. I would buy an outfit, then panic and not do anything for days after. I was so afraid we were going to lose our little girl before we even got to meet her. I couldn’t bring myself to set up a nursery but had a baby shower both before and after she was born (one before as proof of our belief our little girl was going to be ok, one after her first surgery as a celebration of how well she was doing). I would cry for no reason and wanted to keep her inside of me forever, where she was healthy and thriving. We had to move to New York City two weeks before Faith was scheduled to be induced to ensure that she would be born where we wanted her to be rather than the local hospital. Everything I had planned for went out the window when Faith’s heart was discovered.
I was admitted to the hospital on Sunday, September 28 and induced for delivery on Monday. Faith, however, had plans of her own and was ultimately born on Tuesday, September 30, 2008 by c-section. We didn’t get to hold her, though they did take pictures of her before whisking her away to the NICU to be hooked up to different machines. My husband got to see her that afternoon but they wouldn’t let me go to her until almost 12 hours later. By this point I was in full fledge panic and all I wanted was to see my little girl for the first time.
We didn’t get to hold Faith until she was three days old because of all the wires and things she was hooked up to but spent hours at her bedside, talking to her and touching her. She had her first surgery when she was 6 days old (the Norwood). This surgery put in a temporary shunt to hold open the PDA in her heart until she was big enough for the second surgery. The surgery went well but that night, fluid starting building up in her chest and Faith’s oxygen levels dropped causing her to crash and have her chest reopened. We rushed back to the hospital at 3 AM but by the time we got there, she was stable. Faith’s chest was open for the next couple days while her body adjusted. She finally was able to come home after three long weeks in the NICU, just in time for Halloween.
Faith thrived at home. She wouldn’t take a bottle and had to be tube fed but was such a happy little baby. She had her second open heart surgery on February 12, 2009 and had no major issues. The Glenn operation removes the shunt and redirects the blood flow in the top half of the body. We were home in 2 weeks and Faith bounced back immediately at home. She continued to thrive, meeting all milestones and making us happier than we have ever been.
On July 21, 2009, Faith went back to Columbia for a catheterization. Things did not go well. They found that her right pulmonary veins were very narrow and didn’t give us much hope. For the first time in her life, we had to face the very real possibility we would lose our little girl. The doctors were grim, giving her at best 50/50 odds of having the Fontan surgery but they really didn’t have a plan as to how to treat the veins other than to pray they grew. We were devastated but were not going to give up on the love of our lives.
With the help of our pediatrician and cardiologist, we found out Boston Children’s Hospital had an entire department devoted to kids like Faith. Armed with our parents, my husband and I took Faith up to Boston in December 2009 for a variety of tests. When we met with the doctor, she said Faith had Pulmonary Vein Stenosis. Pulmonary Vein Stenosis is an extremely rare condition with little research done on it. Cells grow within the vein and stop blood from being able to flow from the heart to the lungs. A lung scan showed that Faith was getting less than 1% blood flow to her right lung and there was a very real chance of her losing use of that lung. We were scared but the doctors were very confident that putting Faith on an experimental chemotherapy called Gleevac could stop the stenosis. Like cancer, cells were growing where they shouldn’t be and the Gleevac was targeted to destroy these unwanted cells. Faith had a cath done on December 21, 2009 to see if she’d be eligible for a surgery that would restore use of her right lung. We were the only people rooting for Christmas in the ICU because it would mean Faith would be eligible for surgery. The cath was a success and Faith had her third open heart surgery on December 23, 2009. This surgery was successful, we were thrilled! We spent a week and a half in the hospital after this surgery and took Faith home, armed with Gleevac and a plan. We were so confident this medicine was going to save our little girl.
2010 was a year filled with hospital visits for us. Once a month my mom and I would take Faith up to Boston for a sedated echo and lung scan and to evaluate the effectiveness of the Gleevac. Things were overall, positive. Faith was responding to the medicine and her stenosis was becoming manageable. She had two caths during the year, both of which were successful and Faith continued to amaze us in every way. She was such a talker! She had more words than any other two year old I’ve ever met and LOVED to snuggle. She was a late walker and always preferred to be carried but she could do it and would get this little devil grin each time she succeeded.
After Halloween, things began to change. Faith began to retain fluid in her face and stomach. We asked all of her doctors about it but no one seemed concerned or have any thoughts on what was causing it. In early December 2010, her doctor decided another cath was in order to see if they could find out what was going on with the fluid. We scheduled the cath for January 3, 2011.
On Saturday, December 18, Faith started randomly screaming and complaining her tummy hurt. Her stomach was very large and distended. She would wake up in the middle of the night screaming but I would go in and give her a drink and rub her tummy and she’d go back to sleep immediately. On Tuesday, both Faith and I were exhausted so I called the pediatrician, cardiologist, and GI doctors. Her pediatrician finally got back to me late that evening and suggested I take her to the Emergency Room at Yale-New Haven to rule out an intestinal blockage. After a few hours in the ER, we were discharged saying to give her Maalox.
Wednesday, Faith was very sleepy but I thought it was just because she was so exhausted. No one had been getting much sleep so I thought it was just catching up with her. Her pediatrician called around 3 to see how things were going and I said they were the same, Faith was still screaming, still complaining. He suggested I bring her in to see him at 5:15. At 4:45, my mom and I got her ready to go. Faith was fine, she was talking, acting like a sleepier version of Faith but nothing major.
Something happened on the ride over to the doctor’s office. I don’t know what. She was grunting in the car but I couldn’t see her because it was dark out. We got into the lobby and she didn’t look right. I was so scared. Her eyes were rolled back and she was nonresponsive to me. I thought she’d had a stroke and we quickly hurried upstairs to the office. When we got in the office, she seemed to snap out of it a bit and cried when I got her undressed, sat on the scale on her own. I started to think maybe I’d imagined it. The nurse left us and almost immediately Faith’s back gave out and she started turning blue. My mom ran and got the doctor and they came in and started working on her. I was holding her when all of a sudden she stopped breathing and I felt her little soul leave her body. They kicked me out of the room to work on her while they were waiting for the ambulance. I went to my mom but I knew in my heart she was gone. It is a feeling I can’t describe other than to say I literally felt her leave me, I knew she wasn’t coming back. We were rushed to the ER and they worked on her for over an hour before it was time to let her go.
Our world has been turned upside down since December 22, 2010 when we lost our little princess. Nothing is the same without her here. We are so blessed to call ourselves Faith’s parents and consider ourselves lucky to have known and loved her.
Being on the CHD roller coaster has had its ups and downs but all in all, we are better people since she was here and we wouldn’t trade her for the world. We had our second child, a heart healthy baby girl on June 21, 2011. Hope Margaret looks just like her big sister and has so many of Faith’s personality traits. We always said that if she has half the personality and spunk of Faith, we will be twice blessed as the luckiest parents there ever were and so far, that’s proving true.
Faithy truly loved the world and the world loved Faithy but we know she dances with the angels now and lives forever in our hearts.
Corbin's Story:
At our routine 20 week ultrasound, the doctors found something wrong with our baby's heart.We
were sent to a specialist for fetal echocardiograms. During that visit, we learned that our baby boy had
a Congenital Heart Defect (CHD), a fatal heart condition called Hypoplastic Left Heart Syndrome.
Basically, he had only half a heart. These were the options we faced: have a late-term abortion; offer the baby only comfort and care after birth and let him pass away within hours;place our baby on a heart transplant
list and await a donor; or find a hospital that would perform experimental surgery to try and save his life.
The last option meant immediate heart to enable it to function with only one ventricle. That surgery would be the first in a series of three open heart surgeries over a course of two years. Needless to say, the situation was overwhelming and the and the decision daunting.
We immediately knew we would try and save our son's precious, God-given life and began immediately searching for a hospital. We chose the hospital at the University of Michigan and traveled to Ann Arbor to give birth to our son, whom we named Corbin. After much prayer, we chose the three-surgery option. Just three days old, Corbin had his first open heart surgery.
Corbin was released from the hospital several weeks later. What joy it gave us to bring home our little baby boy! But, as thrilling as it was, it was equally frightening. He was outfitted with a feeding tube that ran from his nose to his tummy. He needed to be fed every two hours. He also took five different medications for his heart.
We adjusted well and life was good, but then things went terribly wrong. Corbin was losing weight and was very blue. One evening we rushed Corbin to the emergency room because he was not responding. Once there, they rushed him into the operating room to perform a heart catherization to take pictures of the inside of his heart. They found he was not getting enough oxygenbecause his heart was not functioning properly. He was placed on a ventilator to help him breath and was flown by life flight back to Michigan.
Corbin was very ill. After weeks of testing, we learned that Corbin had developed a blood disorder from the way they had re-routed his heart. It was critical that he have another surgery as soon as possible. His second heart surgery wasn’t supposed to take place for another three months, at the soonest, so he would have a chance to heal and grow. But, events superseded this initial plan and, at 8 weeks of age, we once again watched our son go off for heart surgery. After 7 hours in the operating room, we learned that Corbin was critical and would be in the ICU in a few hours. Three hours later, we were able to see him.
That evening, Corbin’s heart stopped and he was rushed down for his 2nd emergency heart catherization. His heart was just giving up. Atmidnight, Corbin was placed on an ECMO (extracorporeal membraneoxygenation) machine that pumped his heart and oxygenated his body for him. The goal was to enable his tired, tired body to heal and rest.
Corbin never stabilized, however, despite the rest the ECMO provided. So, at 10 weeks of age, the doctors decided to try another time to repair and re-route his heart. We watched, again, as our precious boy was wheeled into the operating room. After a grueling 9 hours in surgery, Corbin was taken off the external heart and lung machine. We were so excited to learn that he was brought up to the ICU with his own heart doing all the work!
Corbin began the slow process of healing. But, one morning we arrived at ICU to learn that Corbin had once again taken a turn for the worse. He was rushed down to the heart catherization OR. We learned that some of his arteries were closing off. And so, we watched the doctors take Corbin to his 4th surgery--in only three months.
How very difficult it was to see him go through so much and fight so hard. We questioned if we were doing the right thing. But then Corbin showed us how strong he was. He immediately bounced back and finally came off the ventilator and began breathing on his own. We were so relieved to see such progress.
But as time went on, we learned that Corbin was draining fluid from the tubes in his chest. He was losing important proteins and fats to help his body heal. So after a long discussion with the team, Corbin went in for his 5th surgery. This time, instead of operating through his chest, they entered through his side to stop the bleeding, clear out his chest cavity, and give him a faster recovery.
At six months of age, Corbin was finally ready to come home again. He was still a very sick little boy. He flew home with a pump that fed him constantly since he was still unable to suck or swallow without it going into his lungs. He was on oxygen for his lungs and to keep the pressure in the arteries to his lungs down. His medications were many and overwhelming--he was on 21 different medications given over 60 times a day. And, even though he was six months old, he was developmentally at a newborn level.
During Corbin’s hospital stay, Travis' job transferred us from North Carolina to Virginia, a move which positioned us better financially to handle the looming medical bills. We found a great medical team in Virginia and Corbin made amazing progress. He dropped to only six heart medications daily and needed oxygen only at night. Further, Corbin made great strides developmentally. He learned to eat completely on his own, a skill we wondered if we'd ever witness since he spent so much of his life on a feeding tube.
We were so enjoying life with Corbin, which had become relatively stable. But April 2006 started a new chapter. It was then we faced another surgery to repair Corbin's heart. On April 13, 2006 Corbin went in for his 6th open heart surgery. We prayed it would be his last for years to come. He went in physically strong
and the odds were fairly good.
The surgery went perfectly. But on the elevator ride from the OR to ICU Corbin’s heart stopped. When we finally saw him, he was critical and bleeding badly from the chest compressions performed to revive him. There was nothing left to be done but wait.
Amazingly, he responded over the coming week. We were down graded from ICU to general care and were overjoyed. But, within an hour ofleaving the ICU, Corbin's heart stopped while he was in my arms andbegan bleeding profusely. He was rushed back to ICU. We learned after several hours that they could not get his heart to function again. Corbin was once again placed on the ECMO to keep his body alive. Again, the hope was to enable him to rest while allowing the surgeons to determine a course of action. Meanwhile, his need for donated blood was very high; he used over 500 units in just three days. The chest compressions performed to save his life damaged the walls of his chest cavity, causing intense bleeding. They needed to operate again to stop the bleeding or he would not survive.
They stopped the bleeding and we were overjoyed! He remained on ECMO for three more weeks. Then, we celebrated again as he was downgraded from ICU to a unit requiring less care. But our hopes quickly faded when, within days, we learned Corbin was not getting any blood flow into his left lung. This would require intervention once again.
After reviewing many options, it was decided to attempt a heartcatherization to open the artery. Thus, Corbin was wheeled away for his 10th heart catherization surgery. During the procedure, complications arose and they lost two of the stents that would have opened the artery. Those stents had to be removed from his heart. So Corbin was taken for emergency surgery to remove the stents and repair his heart. Although they worked for 12 hours, the doctors were able to remove only one stent. The next day, they performed his 9th open heart surgery to remove the final stent.
It was during this surgery that a major complication arose. Corbin wasplaced on a heart lung pump during surgery and a blood clot passed through to his brain. This caused major bleeding in Corbin's brain.Corbin never awoke from his last surgery. On June 29, 2006, Corbin passed away after an amazing fight.
We miss Corbin greatly. But we are grateful to God that He gave Corbin to us, even though it was only for a short 23 months. In his brief life on earth, Corbin taught many big lessons. He taught us perseverance. He taught us to find joy in pain and suffering. He taught us what it means to sacrifice for loved ones. And he taught us to cling to God in prayer.This was God's plan for Corbin's life, and ours, and God faithfully is guiding us through this trial, for He never leaves us nor forsakes us. Praise be to God.
Soren's Story:
My husband Scott and I found out we were pregnant with baby # 4 in April 2007. We were so excited to find out that we were having another boy. We decided on the name Soren Blake Shafer. Two boy’s two girls! How perfect! I had a rough pregnancy. I was sick all the time. I had lost about 26 pounds during the pregnancy and the doctor wanted to make sure the baby was big enough. So at 30 weeks we went to a high risk specialist to check the baby’s size. He was in the 95th percentile. The ultrasound took what seemed to be a long time. When he was done he said very compassionately, I wish I had better news for you. Your baby’s heart does not look normal. I was in shock. I said, that can’t be right, we are here just to see if he is big enough. I can’t remember much after that. I remember they said it would be wise to do an amino test to check for chromosome problems. I did not know what to do. I had gone to the appointment with my mother so she could see the baby. I really did not think any thing would be wrong and I was just happy to get another sonogram. My husband was at work. My mom called him and told him what the doctor had said. I was so upset I could not talk or think straight. We made plans to go to have the amino test later that day. We went for the test and when we received the results back it was negative for any chromosome problems.
The high risk doctor made me an appointment to see a cardiologist. At the appointment they did a fetal echo cardiogram. After they were done they asked us to wait in another room. Not too long after the Doctor came in. He said your baby has Hypo-Plastic Left Heart Syndrome. He explained to us that the left side of his heart was so underdeveloped that it was of no use. With out treatment there is no chance of survival. There are 3 options, Compassionate care, where we would just keep him comfortable and spend what time he had with him, Open heart surgery in 3 stages, the Norwood, the Glen and the Fontan, Or a transplant. We were told that even the treatments could not guarantee anything. But we were given hope that he could live. So we left and had a lot to think about and discuss. In our minds we only had two options. God has given man the knowledge to help us. He tells us how precious life is. I believe we should do what we can. So we were left to talk about the 3 stage surgeries or transplant. We decided to go with the 3 stage surgeries. It was the recommendation of Soren’s cardiothoracic surgeon.
We had many appointments with cardiology to prepare for his birth. His heart was on the wrong side of his body and backward. It was hard for the cardiologist to tell what was what because every thing was backward and so many of the connections to and from the heart were in the wrong places. We were even told at one point he had hypo-plastic right heart syndrome, because every thing was so backward they thought the right was left and the left was right. That was once again changed back to hypo-plastic left heart syndrome. We also found out that he had double outlet right ventricle and pulmonary stenosis.
My OB care was transferred to the high risk ob team at Loma Linda. I began to have monitoring and ob visits there. I was monitored twice a week at Loma Linda and twice a week in Apple Valley. I was given and induction date of Jan 3rd 08.January 2nd came and I went in for an amino test to check to make sure his lungs were mature. If they were the induction would go as planned for the next day. As they were doing the scan for fluid they saw that there was none. I needed to have the induction that day. I was also having some contractions on my own and was also dilated to 3cm. So everyone was called, and everyone came down to the hospital for the birth.
The induction started with an IV and a medication called pitocin. I began to have more contraction but they were very weak. I went all day having these really weak contractions. They were giving me as much pitocin as they could and nothing really was happening. At 6 pm they broke my water. At 6:14 pm Soren Blake Shafer was born. He weighed 7 lb 9 oz and was 19 in long. The NICU team started their work. They stabilized him and took him to the NICU. It was 12 hours before we were allowed to see him.
When we went to the NICU to see him it was so surreal. We were showed how to scrub in and we had to put hospital gowns on. After we were scrubbed up we were taken back to him. He looked so perfect. To Look at him you would never know how sick he was. He had many lines. He had lines coming from his bally button and IV’s in his arms. He had heart monitors and monitors to check his oxygen saturation. It just seemed like so much for such a little guy.
He was being given a medication called prostin so keep a duct open in his heart that normally closes after birth. If this duck closes he has no way for his body to get any oxygenated blood, so this medication was needed to keep him alive. One of the side effects of this medication was apnic episodes. Soren would forget to breath. This was happening very frequently so he was put on a ventilator. It was hard to see another tube in him but it was needed. It also made it so we could not hold him much.
The doctors and specialist came together and had a conference to decide what was the best way to treat Soren and how and what to do in surgery. Surgery was scheduled for January 11th. Soren was having the Norwood procedure.
Meanwhile I had become ill. I was admitted back to Labor and Delivery with preeclampcia. I did not even know you could get it after delivery but found out you can develop if for up to six weeks post partum. I was there a couple of days. I was getting better and was released. That same night I was rushed back in severer pain. They took me back to Labor and Delivery assuming that is was a complication of delivery. They spent the whole day doing tests and could not figure out what was wrong so I was sent down to the E.R. The E.R ran tests.
This was the morning of January 11th. I was still in the E.R and Soren was going into surgery. The E.R let me go and hold him and say good-bye before they took him back. While he was in surgery, all my tests came back. I had kidney stones. I was so relieved that it was not something worse. I was given pain meds and told what to do. I was released tat the same time we received the call telling us Soren was out of surgery. I was so glad he had made it through surgery.
As soon as I was released we went to his room. He had been in the NICU before and after surgery he went to the Pediatric Cardiac Intensive Care Unit. Soren’s kidneys were not functioning after surgery so he had to be put on a mild form of dialysis. After a few days his kidneys were functioning again so he was taken off the dialysis.
We went to the desk and were showed to his new room. I was shocked at what we saw. I don’t know what I expected him to look like but this was the first time he really looked very sick. I just cried. He was so swollen and he really looked like he was dead. It was so hard to see him like that. It was difficult to deal with, but we were so grateful that he was alive and now we were focusing on getting him better. Soren’s kidneys were not functioning after surgery so he had to be put on a mild form of dialysis. After a few days his kidneys were functioning again so he was taken off the dialysis.
Soren continued to get better each day. He was looking like him self again. He looked beautiful. On January 17 I received a call that they were going to take him of the ventilator. I was so excited. I rushed back to the hospital and there he was. Not a single tube going in to his face. I had missed seeing his beautiful face with out all the tubes. We were able to get so many beautiful pictures. That day the occupational therapist came in to see where he was as far as learning to take feeding by mouth. He had never had anything by mouth so he did not know how to suck. But he was doing so well, we were told he would be coming home soon. He just needed to learn to eat. He was going to be worked with to learn how to feed. The next day January 18th, a NG tube was put back in to feed him while he learned to eat. I had been pumping my breast milk for him so he began to get breadstick through the NG tube. His sisters were able to come for a visit. His brother Brayden had a cold and could not visit. It was wonderful. The girls held him and kissed him and just loved being there with him. They could not wait for him to come home.
On January 19 around 4:00 am I received a call from the PCICU that they had to put Soren back on the ventilator. I had heard many times that sometimes if they are taken of too early they might have to be put back on it. I just figured that was what happened. I knew that it was one step forward two steps back, with all these heart babies. So that morning I got up and rushed to the hospital to see him.
I got to the hospital about 7:00 am. I went to his room and took one look at him and knew something was wrong. He looked very sick and did not even open his eyes. I stayed with him for a while and kept telling his nurse he does not look good, something is wrong.I had been staying at Ronald McDonald House, Loma Linda. I went back there to get something to eat and meet my husband who was coming down from where we live. We both went back to the hospital and he was shocked to see how much worse he looked. Soren belly was so swollen and it had become ridged. I asked his nurse to get a doctor in there. All day I had bee told that the doctor would be coming in to check on him during rounds. I did not want to wait anymore. His nurse told me it was probably air in his belly from being bagged when he had coded during the night. I told him I just could not imagine how uncomfortable that must be for him. I know when I get even a little bit bloated I feel awful. Can you imagine how much that must hurt to have so much air that your belly is so distended and hard! He got the doctor for me and the doctor looked at him and told his nurse that they need to use a machine that has a gently suction to suction his stomach. I was glad something was going to be done. We had to leave so they could do it. We went back to Ronald McDonald House. We had not been gone long and got a call to come back to the hospital. We were met by the Pediatric surgeons‘. We were told they need to do and emergency abdominal exploration surgery because they were very concerned about what they had found while doing the suction and an x-ray had also been done and it did not look good. We were told it would be about 2 hours. The baby in the room with him and had a similar set back where a part of his bowel had died and it had to be cut out. But he had come through it was doing ok. I was thinking this was the same thing. I was worried but not too much. I thought they would just fix it and he would recover. We decided to get something to eat as we had not eaten yet and knew we would not want to leave once he was back form surgery. We picked up a sub to eat and went back to Ronald McDonald house. We walked in to our room to eat and the phone rang. It was the PCICU. They asked us to come back. It had only been a half hour since we left and we were told it would take a couple of hours. I asked how he was doing and the lady on the phone told me the doctor would talk to me about everything when we got there. I knew it must be bad when they would not tell me how he was.
We got to the hospital and went to his room. Soren was in there, but the other baby was gone. I thought that was strange but I was so happy he was in there and he was alive. I had begun to think maybe he did not make it through surgery when they would not tell me how he was.
The surgeon came in, and told us, his heart was not able to get enough oxygenated blood to his digestive organs and everything had died. There was nothing more they could do for him. He was going to die. I was devastated. I could not believe there was nothing they could do. I told them can’t you do something! This is my baby! God gave him to me because he wanted me to have him! I even asked if they could take mine and give it to him. Anything to save him. All they could say was they were very sorry but there was nothing they could do. We called our family and every came. My Mom and Dad had already been on there way when I called to tell them he was going into surgery. So they got there and they called everyone else and had everyone come to say their good-byes. My parents, my sisters, my sister Lisa’s boyfriend Richard, By brother John, a dear family friend Heather, my good friend Randa, who also had a baby in the hospital and was staying at Ronald McDonald House, and our children Allison, Jocelyn and Brayden ala came. We all took turns holding him. We were able to take our only family picture that night. We prayed and cried. At 4:10 am on January 20th, Soren Blake Shafer died in my arms.
I miss my Beautiful Baby. I will never forget you Soren. Never was there a baby more loved or wanted. You were a remarkable little boy. In just 17 days you completed what God sent you here for. You did what takes most of us a lifetime in just a few short days. Even God knew how special you were and called you home. I love you so much.
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