We were elated at the news about having our second child. Our oldest daughter was 4 years old and in great health, so not much worry went into thinking about the pregnancy.We went in April 13, 2006 (the Thursday before Easter) for our 22 week ultrasound, very excited to see our baby. My husband, daughter, and mother were all with me as the ultrasound was performed. Everything looked great except for some white spots on our baby's heart. Our ultrasound tech - Char-said not to worry, that sometimes things showed up and it was probably nothing. She left the room and came back with an appointment with a pediatric cardiologist on Monday. She encouraged us not to worry over the weekend which seemed like an impossible task.Monday slowly came and we went in to the Pediatric Cardiologist. An extensive ultra sound was performed. When the doctor was finished, I got dressed and she came back in the room with a giant heart model. This is never a good sign, and our hearts fell immediately, knowing that bad news were headed our way. She proceeded to explain that our baby had critical aortic stenosis. She explained that if our baby survived in utero that her left ventricle would not grow and she would have HLHS. Explanation of HLHS
With this prognosis, she continued to tell us what the outlook would be for our child's life. At a minimum she would have to have three major surgeries to re route the plumbing in the heart. Since the left ventricle would not be functioning, all flow would have to be pumped through the right ventricle. The first operation is done within a few days of birth.
She was very kind, and told us that we had a few options. We could terminate the pregnancy (which wasn’t an option for us). We could wait and see if she made it to birth and then have the 3 surgeries. The final option was a little risky. She knew of a colleague in Cleveland that was doing experimental research with fetal interventions. We told her we were interested in anything that may help our unborn child. She tried getting in touch with her colleague but was unable to reach him. She informed us that they also performed this procedure in Boston and that she would try to contact the doctors and call us later.We left the office, got in the car and cried our eyes out. We were devastated, not knowing if our baby would survive, and if so what kind of life he/she would have in the future. We went home to our 4 year old and cried some more. My mom and step dad were there and I told my mom it wasn’t good news and we all just stood
Dr. Pyevich, our cardiologist called and told us that Dr. Wayne Tworetzky from Boston would call us later that evening to see if we might be good candidates. Dr. Wayne, as we began to call him, called around 10:30pm that night. He explained the procedure that they would try to perform was basically like a balloon catheterization. There would be a team of several doctors that would go directly through my stomach and amniotic fluid into our baby’s heart (which was the size of a grape) and balloon her aortic valve. They are doing this in hopes that the flow of
blood can get into her left ventricle and save her ventricle.
Dr. Wayne told us he would try to get the team together and see if we could go out to Boston. He informed us that we may get there and not even be good candidates as they look for certain criteria. We told him we could be out the next day if he could get everything in order.
We called the next morning and found that we were indeed scheduled to be seen. We flew out that morning and arrived late Tuesday night. Dr. Wayne met us at our hotel and took us to Children’s Hospital. We then had an ultrasound to see if we were good candidates. We found out we were having a girl and that her heart looked good for the intervention. We were scared and excited to have the opportunity to do something that could possibly help our little girl. We called our oldest daughter, Madison, and told her we were having a girl and she said “We need to name her Hannah.”The next day we went into the hospital and met with the many doctors to explain exactly what the procedure was going to be along with all the risks. Not only was it risky that Hannah could die during the procedure, but there was a lot of risk to myself. My husband and I had no doubt that this is what we were to do. I think God just gave us peace through the craziness. So I was prepped for surgery.The procedure went beautifully and Hannah and I were fine. We were extremely thankful that she made it through. Now only time would tell. The doctors at this point were very happy with the results and could immediately see the flow open to her ventricle.We flew home on Friday and over the next few months Hannah was checked quite frequently. We continued to pray that she would make it and not have HLHS. Through the remainder of my pregnancy Hannah’s heart seemed to be continuing to grow.As time grew closer for her to enter this world, we realized we only felt comfortable with her being delivered in Boston. Boston’s Children’s Hospital had new surgeries that were not available at other hospitals, and we were emotionally connected to the team in Boston and felt more comfortable going there.
We arrived in Boston on July 26, 2006 preparing to deliver Hannah. Dr. Wayne performed another echocardiogram and was pleased that her ventricle had been growing. He explained that we would have to wait and see how she did once she was born to decide what type of surgery and issues she would be facing.
On August 3, 2006 Hannah Abigail Alysse Wells was born by C-section. She looked pink and healthy and it was difficult to believe there was anything wrong with her. She was 8 lbs 12 oz. and 19 inches. I got to hold her for a couple of minutes and then they took her to intensive care unit triage to exam her. My husband, John, was able to go with them and I was taken to recovery.
The next day she was taken into surgery for another balloon catheterization on her aortic valve. Her left ventricle had grown but there was narrowing in the valve again. The amazing news was that she didn’t have HLHS. The balloon catheterization did not go as well as everyone had hoped. There was a tear made in one of the leaflets of her aortic valve. This caused leakage of the valve which is only tolerated to a point. The doctors told us they would watch her for a few days to see if she could tolerate the tear. It was a rough night and we were told later she almost didn’t make it through.We watched our baby girl everyday, praying she would make it and be able to have a healthy life. As the days progressed she started to improve. They gradually weaned her off medicines and machines and we were released on the 21st of August. We were told by the Boston doctors that, hopefully, she would not need surgery until she was around 2 years old. We were so thankful to be home and to have our girls. We were ready to get back to what would be normal for us. The next few months were uneventful. We were adjusting to having a girl with heart disease and what this involved. She was on several medications that we had to administer 3 times a day and we were encouraged to not take her out as to avoid any illnesses.
Hannah had regular echocardiograms over the next 2 years and developed as a normal 2 year old. We knew from the doctors information that she was probably going to need surgery. We contacted Boston and had a Cardiac MRI
scheduled to see what she needed.
We went back to Boston July 2008 for Hannah to be checked out by Dr. Wayne and Dr. Marshall. After the MRI we were told she indeed needed open heart surgery to repair her aortic valve.
Even though we expected the news, we were very scared at what could happen. We were extremely blessed because Dr. Del Nido, the surgeon, had a cancellation for the next day. So sweet Hannah went in for open heart surgery.The operation went beautifully. Dr. Del Nido made a repair of her valve. He took tissue from her pericardium and built up the leaflet of her heart. He built it to the size of a 10 year olds heart to give room for her heart to grow. He also removed scar tissue from the previous procedures.We got into Boston on Monday, had Hannah’s MRI on Tuesday, had her open heart surgery on Wednesday and were home by the next Thursday. She did great after her surgery, in fact 2 days after her surgery she literally tried to hang from the table in the cafeteria.
This summer, Hannah had her 2nd open heart surgery. We arrived at Boston, and on June 13th she had a catheterization and MRI to see what she would need done. It was determined that she would hopefully have a repair on her aortic valve. Monday, June 16th Dr. Del Nido performed her repair and she did awesome! They were able to do the same type of surgery that she had when she was 2 years old. She healed quickly and we were home by the 24th of June.
Hannah will turn 8 years old this August. God has given her an amazing spirit. She is strong and feisty. Through it all she has remained a healthy child. We cherish each day and are thankful for the gift of doctors to look out of the box and create new techniques for these children with heart complications. We know without this new technology our girl would not be here. We are incredibly grateful for our little miracle girl.
We have created this foundation to pass along the blessings! We can't express enough gratitude and know God has placed Hannah in our hands for a greater purpose. Hannah's last day of school she looked at me and said, "Mom, I'm glad I have heart problems, because we probably wouldn't have helped people if I didn't." She is a precious girl and may have some problems with her heart, but to this Mom she has the purest, most beautiful heart ever!
Feel free to pass along this info to anyone who may need it and if you or someone you know is experiencing these same kind of problems - do not hesitate to email us at firstname.lastname@example.org
Believe it or not, there are a LOT of details we left out. We can elaborate on places to contact for help, people that have the expert information, and social service contacts that may be able to help out anyone that may be in need.