Micah's Story
Most mothers of babies born with congenital heart defects wonder why or how their child was born with a heart defect. In my case, I know how. I was born with one and my genetics passed it on to my son, Micah. I was born with tetrology of fallot. I had a shunt placed at the University of Iowa when I was four months old and had open-heart surgery when I was two years old. I have been in and out of cardiology appointments, and had numerous echos and ekg's completed. At some point in my life, I might need another open-heart surgery.
When my daughter, McKenna, was born in 2005, I remember having a conversation with my mom. I told her that I could not deal with having a child with a heart defect like me. Little did I know what the future would hold. In May, 2007 my husband, Rick and I found out that we were going to have another child. Something inside me told me that something was not right with this baby. On September 18, 2007, when I was 20 weeks pregnant, my fears were confirmed. Knowing that I have a greater chance of passing on a heart defect, I was having a level two ultrasound performed. Dr. Barzoom (our perinatologist) gave Rick and I the devastating news. Our son would be born with a heart defect. From the ultrasound he could see that our baby would be born with Double Outlet Right Ventricle (DORV) and possibly transposition of the great vessels.
The next 20 weeks were busy and emotional. Our baby would not be born healthy; we would have to deliver our baby almost 3 hours away, leave our 2 year old with family not knowing for how long, and have to face open-heart surgery. The next 20 weeks were filled with our OB appointments, perinatologist appointments, appointments with hospital dietitians for gestational diabetes, and the hardest one traveling to Children's Hospital in Omaha to meet with the man who was hopefully going to save my baby's life, Dr. Hammel. We knew that our baby would have a heart defect but the prognosis would be unclear until he was born. The doctors were predicting that Micah would do fine at birth but would begin congestive heart failure around 4-6 weeks old.
On January 3, 2008 our son Micah made his entrance into the world. As Rick and I were getting ready to go to the NICU after his delivery, the cardiologist came in. We both knew that it wasn't going to be good news. If it was good, the doctor would not be in our room already. The cardiologist informed Rick, Rick's parents, my parents, and myself that Micah's condition was worse than predicted. He was born with tetrology of fallot with absent pulmonary valve syndrome. We were told that most absent pulmonary valve patients have dilated pulmonary arteries. These dilated arteries often cause lung damage which requires the patients to be placed on respirators for long periods of time. Luckily at this time Micah's lungs appeared to be doing well and he did not need to be put on a ventilator. The cardiologist informed us that surgery was being planned in four days. Over the next couple of days Micah continued to do well. His oxygen levels were good and his lungs were functioning well. The day before the planned surgery we finally met with the surgeon. He informed us that since Micah was doing so well and did not appear to have the lung damage they typically see with absent pulmonary valve babies, we were going to hold off on surgery until Micah showed signs of heart failure. This meant that as long as Micah continued to do well and we could get him to eat from the bottle we could take him home. We spent two weeks in the NICU before Micah finally started to eat with the bottle and gain weight.
The two weeks we spent with Micah in the NICU were long but we felt blessed. Micah was doing better than expected, and the nursing staff and doctors at Children's Hospital in Omaha were amazing. They made us feel very comfortable and we truly appreciated each one of them. In addition, we are fortunate to have parents who made huge sacrifices to help us out. Rick's parents took our older daughter, McKenna, who was 2 ½ at the time and my mom spent most of the 2 weeks with us in Omaha. It was hard to be away from our daughter and it made us feel terrible to be away from her for so long but Rick's parents brought her to see us a couple of times and we knew we had to be with Micah.
After leaving the NICU it felt great to be able to bring Micah home. McKenna was so excited to see us and her new baby brother. Since it was the middle of winter, and the middle of the cold and flu season, we had to limit our exposure to others so Micah would not get sick. Rick had to go back to work so it was hard for me to be stuck in the house feeling like you can't go anywhere.
During our time at home Micah continued to do well. He was showing us that he was a fighter and that a heart defect was not going to slow him down. The weeks went by and he continued to grow and eat well, and his oxygen levels were still high. When Micah was three months old, we met with Micah's pediatric cardiologist in Sioux City; he thought we could go ahead and start thinking about a time that would work for us to go back to Omaha for Micah's surgery. He felt that Micah would be strong enough so surgery should be easier on him. We scheduled the surgery for May 21, 2008 Micah was almost 5 months old when we headed back to Omaha.
The day before surgery we met with the surgeon and he was still unsure what he would find when they opened Micah up. They knew from his echos that he had absent pulmonary valve syndrome but there are different severities based on the amount of pulmonary artery dilation and lung damage. Since Micah showed no signs of respiratory distress he figured there was minimal lung damage and only a moderate amount of pulmonary artery dilation. This meant we should be able to avoid a complete pulmonary valve replacement which, if needed, would have to be replaced several times throughout Micah's life.
The morning of Micah's surgery was obviously difficult. It is so hard to hand your almost 5 month old child, who on the outside appears completely healthy and happy, over to a team of doctors who are about to stop his heart. As a parent all you want to do is protect your children and keep them from harm but sometimes you have to trust God's plan and all you can do is pray. Shortly after we left Micah the surgeon gave us the pre-op report. After they put Micah to sleep they performed another echo and Dr. Hammel was confident that a pulmonary valve replacement would not be necessary. About six hours later Dr. Hammel reported that the surgery went well and he was able to avoid a complete pulmonary valve replacement. However, the pulmonary arteries were much more dilated than expected and he was surprised Micah did not have any respiratory issues.
Micah continued his fighting ways after surgery. They were able to take him off the ventilator right after surgery and after 5 days we were on our way back home. Since surgery Micah continues to do well. He is growing and unless you see his scar you would never know he has a heart defect. We recently found out that Micah will possibly need a balloon procedure through a catheter to relieve some pressure on his right ventricle in the next couple of years, and eventually he will need a pulmonary valve replacement. However, we are lucky that Micah's condition wasn't as serious as a lot a kids with absent pulmonary valve syndrome.
Congenital heart defects are serious issues. We are lucky. Our son was born with a heart defect that is well understood and can be repaired. Unfortunately, there are still too many children who are born with defects that are not as well understood and not as easily repaired. More research needs to be done to help the doctors who care for our precious children so they can better understand how to care for these children. In addition, research needs to be done on the causes of these defects. Our hope is that by the time Micah is ready to start his own family there will be more awareness and answers for him when he has questions about the chances of one of his kids having a heart defect. Rick and I hope that history does not repeat itself for the third time.
Courtney and Rick Loutsch Micah's Mom and Dad