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Wednesday, December 17, 2008

Diagnosis: HLHS

This blog will be mostly dedicated to my unborn son whom in utero has been diagnosed with a rare congenital heart defect called Hypoplastic Left Heart Syndrome. This information comes from the Hospital that will be taking care of my son's surgery a few days after birth. Its one of the best informational site that I found regarding HLHS. It gives hope because I know they will do their best to take care of him.

Dec 11, 2008, will probably be a day that I will never forget. It all started with a routine visit to my OB in November. We were scheduled for a 22 week sonogram and were excited to find out it was a BOY! He's taking measurements, but the baby was in such a position to where all we could really see was his spine. I was scheduled two weeks later for another sonogram. Doctor said it was only to get the rest of the measurements that we had missed that day. So, here we are again two weeks later. Measurements on the sonogram were going just fine until he said that he couldn't get a good view of the four chambers of the heart. He then said that he wanted to schedule me with a Perinatal OB specializing in high risk pregnancy. This all happened right before Thanksgiving and they couldn't get me scheduled in with him until after Thanksgiving. I didn't think I could wait that long. We called that doctor's office and said that we'd be there at the drop of a dime if someone were to cancel. They put us first on the list. So, here I am waiting and a couple of days before Thanksgiving, the doc's office calls to tell me that they have a cancellation and I have to be there within two hours. We're on our way to see the specialist. It takes for what seems like days to go through all the new patient paperwork and we finally get into the sonogram room. The sonographer is complaining of the way the baby is positioned (baby seems to be a contortionist with his legs behind his head)and so he calls the doctor in to see if he can maybe make the baby move. No such luck, but he does try to get some pictures of the heart. His expressions aren't very good and we get worried. After minutes of trying to get a good picture (so he said), he tells us that we are going to have to be scheduled with the Pediatric Cardiologist (flies in every month for him) to do an echocardiogram on December 11th. You can't imagine how long those two weeks felt for us. We prayed and prayed that nothing was wrong and that it was just the way the baby was positioned.

Dec 11th finally came and here we are again anxiously waiting in the lobby. The cardiologist was not there yet. We waited for about 20 minutes and she finally showed up. We finally end up in the same sonogram room that we were in two weeks ago. She warned us that she gets very quiet while she is doing her thing and will be giving stats to her assistant while doing so, but promises to tell me everything afterward. It took about 20 to 30 minutes for her to finally finish. She turned on the lights and said "I'll be right back, I'm going to go draw a picture of what I see for you to understand it better." My heart sank! I knew something was wrong for sure. Again, waited for another few minutes before she came back with her pictures. To make another long story short, DIAGNOSIS-our son has HLHS. She explained that he will have to have open heart surgery right after his birth, one at a few months of age and hopefully the last at about 2-4 years of age. You might click on the link to give you a full picture of what will happen during these surgeries. I guess my reaction was a little delayed because I started crying midways through her explanation. I just can't imagine a child having to go through this. Why can't it be me? What did I do wrong? Why my child?
I knew from reading the information given for HLHS, that my son does have a pretty slim chance of living and that three options they give parents are 1)compassionate care (take him home, give him comfort and wait for the Lord's hands to take him), 2)a three stage surgery to reroute the blood flow and such, or 3) a heart transplant. She is telling us that the three surgeries are the greatest chance of survival because without them, he had no chance of life. A transplant for a newborn is usually out of the question because of the sparcity of newborn hearts. We tell her "okay, we'll do anything and go anywhere." The doc's assistant tells us my next appointment is on the 31st and they will give us more detailed information at that time. They did say, that by January we should be going to Dallas to meet the OB that will be taking care of me there, and the surgeon whom will be taking my son after delivery. We'll have to stay/live in Dallas for a month before I'm due to deliver in case there are any complications. That's all we know for now. I'll give updates as we get them. They will be taking care of him at the Children's Medical Center in Dallas. I've done my research and know that they are one of the best hospitals that specialize in children's hearts in Texas.
So in a nutshell, we're living in a nightmare and I'll never be able to wake up and know things are fine. I realize that we have to be strong for our son and have faith that he will be a survivor. We have to give him that fighting chance. His family is counting on him. I'm really glad she didn't mention compassionate care or pregnancy termination. I think I would have punched her. I had been thinking to myself that I would never just let my child die. It would be kind of like letting him fall into a pool of water and just watching him drown. He picked us as his parents for a reason. He knew we'd give him a chance in this world. I think we are also really blessed that they caught this early. Many parents do not know that their newborn may have this condition and they take him home thinking things are fine until sometimes its too late. The baby's heart is too weak to withstand any surgery.
My first son, Eli is waiting for his little brother. I can't fathom the thought of when we have to tell him that his little brother is very sick. Although I'd like to give a lot of my attention to this baby (even though not born yet), we have to realize that we have an allergy-stricken, but otherwise healthy 3 year old that needs just as much attention. He's is what keeps me going and I would never neglect him. So, I'll pretty much be talking about him in this blog too. I could never leave him out.
Even though they (some) may not let us know, I know our family cares. Maybe they just don't really understand the extent of what is to come. Maybe this will help them understand all this complexity.


  1. Like I've said several times, let me know if there is anything I can do. I'm here for you guys and most definitely plan to be there whenever you need me.

  2. You and your family are in our prayers. Please let us know if there is anything that we can do for ya'll.

    Clarissia Lynn


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