After we gather our stuff we are lead into another office. One nurse see’s that we’re with our daughter and asks us if we want her to go to the lounge area, there’s toys and TV out there so we figure things might go easier if we just let her go. We wait in the room with nothing but our thoughts. Soon, we’re greeted by a specialist who goes into detail on what exactly is wrong with our daughter and we’re introduced to the term HLH or Hypoplastic left heart syndrome. In the simplest terms, one side of her heart, in her case the right side, is severely undeveloped. In most cases, the left side is the undeveloped and the right side is fine. With her, it’s a rarer variation of the defect.
The pediatric cardiology specialist draws pictures or a normal heart and one with HLH, tells us how many children are born with it, how it’s treated and all other amazing facts but I can’t really say I heard any of this. In fact, if my wife weren’t there being the responsible person and actually absorbing all this info I doubt you’d be able to convince me I was actually there in the room.
After the meeting, we’re told we’re going to have an appointment over the next few days to meet with the person who’s going to be doing Camryn’s surgery. Camryn would need 3 or more heart surgeries to correct the issues. The first would be done within the first few days after she’s born. Keep in mind this is OPEN HEART SURGERY on someone less than 7 days old. I think her odds of survival were 60 – 70% but all we heard was 30-40% chance she might not make it through the 5 to 7-hour procedure. We gather up our daughter and head home. Along the way I place a call to my sister and tell her we have some news on the baby and if we can meet her at my folks place. The drive home is pretty uneventful, as we try and remain calm with the news. We get home and wait for my wife’s mother to get there so we can tell her the news. At this point in the story, this is all we’re doing. We tell her mom, we explain it to our daughter, we tell my dad, we tell my sister and her husband, we tell my wife’s bother, friends and so forth.
A few days later we have to go back for one of the hospital for what becomes a long series of meetings and appointments. This time it was for a complete medical history and for an amniocentesis test. The truth about HLH is that no one really knows what causes it. So the medical history is a way to maybe find a link between one thing and another so maybe they can find a cause. What my wife and I learned during the history is that we were extremely lucky to even have one healthy child. Between the two of us our family history includes prostate cancer, breast cancer, Alzheimer’s, diabetes and of course an undiagnosed case of HLH. It’s amazing how little you think of these things while you’re trying to get pregnant but when you find out something’s wrong and you list all that’s gone wrong or killed your family members you just sit and ask yourselves how you just ignore everything.
So we give our history and we do the amniocentesis test, oh I’m forgetting, the point of the test is to see if there are any birth defects such as Down syndrome and other chromosomal abnormalities. We’re told that we would get the results back in a few days. Depending on the results we would need to decide if we wanted to continue with the pregnancy or terminate. This is important because with HLH it’s a tough life on the child plus there’s a higher risk of death then most a child with any other problem so even if there are no other medical issues Camryn is still in for a long and hard road. The real kicker is, we’re pretty much against the cutoff for when you can have an abortion in New York. The test results come back and thankfully the test came back saying there were no abnormalities found. We talked as a family about what to do next and it pretty much came down to our family and friends. We knew that because of our family and friends we had a huge support system that would allow us to push through the hardships that might arise after Camryn was born. We tell them we are going to go forward with the pregnancy and start doing research into HLH a prepping ourselves for the next phase of our lives.
***If anyone wants to read up on HLH, here is a good website: http://www.childrenshospital.org/conditions-and-treatments/conditions/hypoplastic-left-heart-syndrome-hlhs#overview-tab