I wanted to start this blog to keep family and friends updated and also to allow the life of our precious baby Hudson to inspire others. I plan on being very candid about the journey and raw emotions that come along with finding out that your baby has a congenital heart defect, as well as how our faith in Jesus Christ is helping us turn tragedy into triumph.
For those of you reading who do not know our story, I want to start at the beginning. My husband and I struggled with infertility for 2 years before getting pregnant with Hudson. It is heartbreaking to want a child so badly while watching so many others effortlessly have the one thing you want the most. In no way was I anything but happy for people that were blessed with children, it was more just sadness for my husband and me. In October 2012 we received the wonderful news we had waited so long to hear; we were pregnant with our first child. We announced the pregnancy to our family at Thanksgiving and later sent out Christmas cards to let our friends know the good news.
All of our initial appointments with our reproductive endocrinologist and OB were great. The baby was always very active at each ultrasound and the heartbeat was perfect. On February 5th at our 20 week appointment everything seemed fine until the doctor came in and said that the ultrasound tech thought she saw fluid around the baby's heart and that my umbilical cord was 2 vessels instead of 3. She said that everything still might be fine but we would need to see a fetal maternal specialist just in case. Call it a mother's instinct, but I immediately knew something was very wrong. After we saw the specialist he said that the baby had critical aortic stenosis. This is where the aortic valve is so narrowed that the left ventricle is having to work too hard because of the high pressure it must overcome in order to pass the blood through such a narrow opening and deliver the blood to the rest of the body. He told us about a clinical trial in Boston that is looking at a surgery that is performed on the baby's heart in utero. Basically the surgeons try to put a balloon in the baby's heart which at this point is about the size of a grape. This would open up the aorta and hopefully prevent the left ventricle from becoming so damaged that it is no longer functional (a condition known as hypoplastic left heart syndrome or HLHS). He sent our information to Boston Children's Hospital, one of the premier pediatric cardiology centers in the country and one of the few places that performs fetal interventions, to see if we would qualify to be enrolled in the study. Unfortunately the next day he called us back and said that Boston believed Hudson's heart was too damaged and that he would probably develop HLHS with or without the surgery. When we found out we didn't qualify for the surgery I felt like all hope was gone, but God quickly showed me I was wrong.
After talking with some of my family, may aunt offered to call her next door neighbor who was a pediatric cardiologist at the University of Alabama at Birmingham (UAB). We ended up getting an appointment with him the following afternoon. During the appointment Dr. Rob Romp confirmed the diagnosis of critical aortic stenosis and he also said that Hudson already had developed HLHS. He basically at this point said once Hudson is born we have 3 options: do no interventions, try to get a heart transplant, or consider a 3 surgery option that allows the right side of the heart to pump blood to the entire body instead of just the lungs. Right now our plan is to proceed with the 3 surgery option which you can read about here
AHA HLHS. It doesn't seem like there are a lot of worse things than a doctor basically telling you that when your child is born, he will be born with only half of a functioning heart. But as he spoke with us longer he told us that they have many patients that are thriving after undergoing these procedures. Since the 1st surgery, the Norwood Procedure, was developed in the 80's, the oldest living survivors are late 20's or early 30's. We had so many questions, but Dr. Romp never made us feel rushed. Honestly he couldn't have been more compassionate. When we left the office around 5:40 on Thursday night all of the office staff was gone. As he walked us out of the office, my husband and I left with a sense of hope that maybe our sweet Hudson could survive this.
Currently we are still awaiting the remainder of the results from the amniocentesis that was performed, as well as getting appointments with some of the other specialists at UAB which is where we will deliver and where Hudson will have his surgeries. This has been the most difficult week of my life, but I believe God gave us this special baby for a reason. We are still praying for a miracle that God will heal our baby boy's heart, but we also know that God may answer our prayers differently than what we are expecting. We both love Hudson so much already. I wish his heart was not damaged, but I would not want any other baby because he is meant to be ours and I believe that God has great plans for this sweet baby. Please pray for our son Hudson as well as for us to make the best decisions for our little boy. If you would like to stay updated on our journey, please subscribe or bookmark our blog for weekly updates.
