My husband Mark and I have two little girls ages 3.5 and 1.5 years old. In January 2013, we found out we were pregnant again. We were so excited. Our family was preparing to make a move from Indianapolis to Kansas City. My husband started his new job on March 11, 2013, while I stayed home in Indy with the girls until our house closed. Two days after he started his job in Kansas City, I started bleeding. I immediately fell apart thinking that I had just miscarried. I called my OB's office, and they had me in for an ultrasound within a couple hours. Since Mark was out of town, my Mom came with me while my good friend Stephanie watched my kiddos. We were relieved to hear the heart beat! But, little did we know, there were problems. My beloved OB came into the room to deliver some bad news. Our baby had a rather large cystic hygroma on the back of her neck. We were informed that a miscarriage was a real possibility since we were so early and there was so much fluid (I was 12 weeks and 4 days). They referred us to a Maternal Fetal Medicine specialist. Of course, we were a mess. I couldn't stop crying. I was in shock that this was happening.
Two days later, we went to see the specialist (and Mark flew home during the first week on his new job in Kansas) where he added hydrops to our list of issues. She had fluid all under her skin as well as in her chest. He put our risk of miscarriage at an 80% chance or greater. I guess when babies have so much fluid at such an early gestational age, the chances are not great. The fluid can put so much stress on the baby's heart that it goes into cardiac arrest, or something like that. They went ahead and drew my blood so they could draw the baby's DNA from that and check for a couple different syndromes that typically go along with the hydrops and cystic hygroma. Test results came back about a week later, and they were negative for Down's Syndrome and Turner's Syndrome. And, we found out our little bundle of joy was another girl!
We were preparing for a miscarriage as the statistics seemed so bleak. Our hearts were broken.
Fast forward about 7 weeks. We were living in Topeka with Mark's parents while we searched for a new home in Olathe (which is an hour and 15 minutes away from his parent's house). We went in for our second visit with the specialist in Kansas (I was just about 20 weeks along) where we would check on the fluid and also have an echo on the baby's heart. We knew that if the hydrops were not gone or starting to go away by this point, then the statistics said only 4-9% of these babies would have a good outcome. In our minds, this was a life and death appointment. Praise God, the hydrops were gone! The cystic hygroma was still present though. The specialist also found that one of the kidneys was very dilated. He also found an issue in her heart. She had Aortic Stenosis, which could lead to Hypoplastic Left Heart Syndrome, which was not good. So, he referred us on to a Pediatric Cardiologist Specialist. We met with them a couple days later.
From that point on, here's the summary: We have confirmed our baby already has Hypoplastic Left Heart Syndrome (HLHS) as well as Restrictive Atrial Septum (RAS). The director reccommended I look into an in-utero procedure they do in Boston. The Boston specialists have only done about 150 of these in 10 years, but they have pioneered the way and have had success with these. We were on board. Unfortunately, we did not qualify for it as her aortic valve was already too small for them to put a balloon in to dilate it more. But, they wanted to keep an eye on her Restrictive Atrial Septum over the next few weeks. I may possibly go in around 24 weeks to have a stent put in to open it up wider so more blood can get through. So, that's where we are right now. Waiting to hear from Boston and waiting for a couple more weeks to go by to see how her RAS looks.
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