Welcome to our CaringBridge site. On October 18th, 2012 our baby girl who is due Feb. 25th was officially diagnosed with Hypoplastic Left Heart Syndrome. A rare heart defect where the left part of her heart did not grow properly. This site to keep family and friends updated with any new information we find out during upcoming doctor appointments and ultrasounds.
All of the craziness began at our 20 week ultrasound on Sept. 25th when the radiologist thought he saw Amniotic Webbing on the scan. Amniotic Webbing is very rare (1 in 5,000 births I think) when one layer of the amniotic sac bursts and causes strings in the amniotic fluid which can get wrapped around the baby and cause amputation of fingers/toes and entire limbs. We went to a specialist in Maple Grove on Oct. 9th. The almost 2 week wait to see the specialist was hard. We tried to not think of the worst possible outcomes and just wait and see what we found out.
During the ultrasound with the perinatal specialist the guy conducting the ultrasound was in great spirits and commented many times that he didn't see any type of amniotic webbing. For the first time in 2 weeks I relaxed just a little.... maybe she was going to be alright! He continued to check the rest of her organs and then stopped on her heart. For the next 20 min. the room was quiet. He checked and rechecked every angle of her heart and watched the blood flow what seemed like a million times. He left saying I need to speak with the doctor about my findings, she will be in to see you soon. After the longest 15 minutes EVER the doctor came in and gave us the news. She informed us that there was no amniotic webbing and that our daughter has all of her limbs/fingers/toes... but then she asked if heart disease ran in either of our families. My heart sank.... she went on to say that she thinks our baby girl has Hypoplastic Left Heart Syndrome. A rare heart defect that will require 3 open heart surgeries. The first one will be around 3-7 days old. The next surgery will be around 3-5 months old, and the last one between 2-4 years old. Needless to say we were both in shock, literally a ton of bricks coming down on top of us. After coming to terms with the fact that our daughter may not have all of her limbs, we were now told she had a heart defect that happens to 4 in every 10,000 children.
On Oct. 18th we had a heart echo ultrasound at Abbott Northwestern with a baby heart specialist who confirmed for sure that our little girl has HLHS.
We left the doctors office with somewhat positive spirits. This heart surgury will be difficult but it is treatable. Since we found it early, she will be in the best care at Children's Hospital with doctors and surgons who have done this specific surgery for over a decade. We have to think that God has been watching over us because without the radiologist misreading the first ultrasound we would have never known about the heart defect and her survival rate being born in Hutchinson would have been very low.
We will now be doctoring at Abbott Northwestern for the remainder of my pregnancy and will be going to ultrasounds every 4 weeks to monitor her heart and the make sure she is growing at a steady rate. Doctors are hoping that I go full term because they want this little lady to be as big and strong as she can be.
We have opened up the Zellabration shirt orders again. It will be closing in 3 days, on February 8th in order to get the shirts in time for Zella’s birthday on the 22nd.
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