Our Letters of Hope

We were so excited to be having our first ultrasound. We were looking forward to seeing the baby for the first time and learning if it was going to be a boy or girl. How quickly that excitement can change to worry. It was during that 20 week ultrasound that we learned that our unborn baby "may" have a heart defect or it could possibly be nothing. That was December 20, 2007. My husband and I left that appointment in disbelief. It had never crossed our minds that our baby would not be born healthy. I guess it was something we just thought was a given. We tried to enjoy all the Christmas gatherings and act as if everything was perfectly fine, as we shared the ultrasound pictures with family and let them know that we would be having a boy. However, in the back of our minds we knew that things very well might not be fine.

It was the day after Christmas when our fears were confirmed. We were at the University of Iowa Children's hospital to have a level two ultrasound. After looking closely at the baby's heart we learned that he indeed had a heart defect. Right away they sent us for a fetal echo. It was performed by Dr. Ben Reinking, who would later become our son's cardiologist. The room was silent as he performed the echo and we looked at a monitor with flashing colors and unknown pictures that represented our son's heart. At the end, he went over the baby's diagnosis; he would be born with severe aortic stenosis. Eventually this would most likely develop into Hypoplastic Left Heart Syndrome (HLHS) as the baby continued to grow inside the womb. HLHS is a rare and complex heart defect in which the left ventricle fails to develop properly, in Carter's case it was because his aortic valve was narrowed. Because of this, the left ventricle is small and can't adequately pump blood to the body. Dr. Reinking told us there was no cure for the defect and he would need to have three surgeries to change how his heart pumped blood. Instead of two functioning ventricles the right ventricle would have to do all the work of the left and right ventricle. Everything at that moment seemed like a blur. Both of us listened in shock, hearing the doctor's words but hardly comprehending.

After the echo we were sent back to the fetal diagnosis doctors to ask questions and go over our options and other things one more time. It was during this meeting that I finally broke down and cried. We were given four options. We could choose to terminate the pregnancy, have the baby undergo the three staged palliation surgeries, put the baby on a transplant list after being born, or take him home and enjoy our time together until he passed away. Talking with these doctors, they made it seem like our best option would be to terminate the pregnancy. I couldn't believe what I was hearing. It was at this point that I realized just how severe this heart defect was. We left the hospital that day completely crushed. Our lives forward would never be the same or at least be anything like we had pictured only a few weeks before.

That night my husband and I just lay in bed and cried. It felt like a bad dream. I kept thinking, "When was I going to wake up? When would this nightmare be over?" For the next few days I didn't want to talk to anyone. I felt like no one could understand what we were going through. I was supposed to be excited about having a baby. This was supposed to be one of the happiest times of my life. After the initial shock began to wear off, my husband and I got on the internet and started researching Hypoplastic Left Heart Syndrome (HLHS). The stories that we read online began to give us hope. We read about other kids who had gone through the surgeries and were leading pretty normal lives. But we also came across stories of babies who were not so fortunate. It was at this point that we decided that we had to give our little guy a chance. We stopped asking why this was happening to us and started learning as much as we could about his condition so we could be prepared when he was born. I went back to enjoying my pregnancy but I continued to pray every night that by some miracle Carter's heart would be healed and would be perfectly normal when he was born.

Carter Daniel Lamka was born on April 23, 2008. It was one of the happiest times of my life. As I held him for the first time he seemed perfectly healthy. But reality quickly set back in as the doctors took him from my arms and whisked him away to the NICU to prepare him for surgery.

I could spend the rest of my letter focusing on the surgeries that he has had or the ups and down of his recovery, or write about the procedures that he has undergone. But all you need to know is that he is not even a year old and has already undergone two open heart surgeries, three cardiac catherizations and has had a surgery to have a g-tube placed. He has spent over 100 days in the hospital and has gone through more than any child or adult should ever have to go through. He will still need another heart surgery, additional catherizations and eventually a heart transplant. What I want to focus on is what it is like to have a child with a Congenital Heart Defect and why I hope some day researchers will find the cause of CHD and a way to prevent it.

Watching your child grow up in a hospital and recovering from major open heart surgery isn't something I would wish upon anybody. We gave Carter over to the surgeon looking like a perfectly healthy little baby. Hours later he was brought back to the PICU looking nothing like we remembered. During those first 24 hours after surgery, he really took a turn for the worse and there was a point where I didn't know if we would be bringing him home from the hospital. It was then that we learned just how much fight Carter had in him and within the next 48 hours things started heading back in the right direction. During Carter's recoveries we saw things that no parent should have to witness; actually seeing your child's heart beating inside their chest under a piece of medical cellophane, an ecmo machine sitting outside the intensive care room just in case your child's condition doesn't improve, an emergency intubation as your child stops breathing, or seeing the terror in your child's eyes as you have to witness them going through another test, procedure, or poke and not being able to do anything to console them.

Besides dealing with the recovery and time spent in the hospital, we continue to deal with the reality of taking care of a heart baby on a day to day basis. There are numerous medicines to be given twice a day. My husband and I know more about the anatomy of a heart than we would like to, we know and watch for signs of heart failure and dehydration, check oxygen saturations and heart rates. Carter continues to struggle with eating from a bottle so we also give him feeds through a g-tube in his stomach. There have been many ups and downs and frustrations in this department. At one point he was eating his bottle like a normal baby and then for reasons unknown to the doctors his eating slowly got worse. One day we are excited and hopeful because he took his whole bottle and the next day we are frustrated and disappointed when he refuses the bottle all together. This has also been the case with keeping down his meals. Cleaning up pools of formula off the floor and doing loads of laundry have unfortunately become part of our daily routine. It is hard not to get frustrated and break down in tears when dealing with this day after day. There are many times I just wish he could eat like a normal baby or the doctors could find a cause and solution to his throwing up. But these are things that are all too common with heart babies. Then on top of all of this, we go into "hibernation" during cold/flu season in fear that he might catch something that would land him back in the hospital. There are many days that I still feel overwhelmed by all of this. It usually takes a good cry, a call to my mom and I'm quickly over it. How could I not get over it when Carter flashes that million dollar smile at me. Luckily, he thinks it is funny when mom cries so my cries quickly turn to laughs as well.

Although things haven't been easy, it is our life and we don't know it any other way. Nobody said being a parent was going to be easy and Carter has definitely proven that. But seeing his smile every day makes everything that we have been through worth it. Unless you were to see the scars on his chest you would never know that Carter has a heart defect. He has an infectious smile that just lights up a room. He loves being outside, going for walks and playing catch with his favorite ball. He waves bye-bye to Daddy every morning as he leaves for work and watches out the window for him to return in the evenings. He loves giving kisses and reading books on my lap. I am grateful everyday that I get these moments with Carter. I feel fortunate that I am able to stay at home and care for Carter and watch him grow. I wouldn't want to miss these moments for anything. This time with him is something that we can never get back.

I still wish that Carter was never born with a heart defect, what parent would ever want to put their child through all that Carter has been through? A part of me feels guilty for choosing to put him through the surgeries. I don't know if I will ever get over that. I can't help but think about Carter when he gets older, will he resent us for putting him through all of this or will he be thankful for giving him a chance? I hope to think that it will be the latter but time will tell.

I'm not writing this letter so others will feel sorry for us. I'm writing it to make others aware of the reality of having a child with a CHD and the importance of support and funding for CHD research. The sad reality of all of this is that many parent don't get to have a whole year with their heart baby, some don't even get to bring there child home from the hospital. The other day I saw a fact that really hit home. The life expectancy for a child born with a highly complex congenital heart defect is only 30 years. We hope that research and science has advanced by then and that won't be the case for Carter. Until then I will continue to spread awareness for CHD and encourage other to support CHD research.

Erin Lamka (Carter's Mom)