Huck’s Heart | CCHD Mama

I feel somewhat like I’ve been hiding something from my blog friends but this has been a hard post to write. I’ve actually started and erased several times but now that we know where we’re headed, this will become my place to not only track and record the rest of my pregnancy but the journey of our sweet baby Huck. This post is long but getting to this point has been sort of long in real life already, and we have even longer roads ahead of us. 

January 20th is a day we won’t ever forget. That’s the day they told us our baby only has half a heart, unofficially diagnosing him with Hypoplastic Left Heart Syndrome (HLHS). We knew after our anatomy scan a couple of weeks ago at 20 weeks that something was off but our OB’s office reassured us that it was probably just a positioning issue or that he was too active, and they scheduled us to come back to check again at 22 weeks. I researched fetal hearts to what I thought was an insane amount so when we went back I knew what his heart should look like. When the scan started, and she checked his heart, I knew it wasn’t all there. Without recounting several conversations with different office staff word for word, I’ll say that my doctors office treated me very poorly that day, doing a follow up scan without plans in place for there being a problem. They apparently intended to do the scan and send me home to wait for a phone call, whenever that would be, but after I demanded some kind of answer and they sent me out to the waiting room basically in hysterics, they somehow tracked down my doctor and had him review the scans and he simply sent his RN to talk to me. My family and I are all so appalled at their lack of compassion when they clearly knew there was a critical issue. It makes my blood boil to even type this much of it. The RN ended up telling us they were referring us to a Maternal Fetal Medicine doctor for a level 2 ultrasound and fetal echo. We weren’t sure how soon this would happen but she said she marked the paperwork “urgent”. 

The next day we got the phone call that we’d be seen in two days at UTMB in Galveston, Texas. I had been praying it would be fast, but was pleasantly surprised at just how fast.

On January 20, we left bright and early and drove 2 and a half hours to Galveston to our appointment. Everyone there was so insanely nice and understanding. The tech started the ultrasound and explained every single thing she was taking pictures of. She got in depth measurements of so many body parts and organs, again confirming he’s a boy (fourth check now) and helping Nolan understand exactly what he was seeing on the large screen on the wall. He’s never had anyone take the time to show him and he’s always a little unsure of what he’s seeing, so ultrasounds haven’t been that exciting for him. But this time because of the time she took and the quality of the machine, he saw everything from 5 little toes and 5 little fingers to lips and nose. We even saw Huck playing with his toes and putting his hand in his mouth. We saw him opening and closing his mouth and flipping around like crazy in there. When the tech switched over to the fetal echo and started on his heart, she went silent. We knew then something was truly wrong. She scanned and took pictures for well over 30 minutes then left to get the MFM specialist. He came in and looked at the ultrasound machine with the tech, asking for specific views himself. He asked if we had any family history of congenital heart defects and we said no. He left to get a book of pictures and brought them back to us. He showed us a normal heart and then an HLHS heart and explained that he either did not have a left side or that it was severely underdeveloped. He said he was referring us on to a pediatric cardiologist and they would try to get us in very quickly with him as well. That visit would be in Pearland this time, which is two hours from us. We asked a few questions about how it happens, what his outcome would be and what life would be like for him. He explained the best he could that sometimes it’s genetic and sometimes environmental and sometimes just random chance. He said Huck would need a series of (hopefully) three reconstructive open heart surgeries starting when he’s born and ending when he’s a toddler. He said that 20 years ago this defect was fatal. But they’ve come a long way with this reconstructive surgery series and now babies are living into their 20’s. There isn’t much data past that because it hasn’t been around long enough. He was optimistic that while he probably wouldn’t ever be an athlete, he had chances to live a fairly normal life. 
From there we notified family and close friends about what we’d found out and waited for the phone call about his next appointment.  

We got the call on Monday the 23rd that our appointment with the pediatric cardiologist would be Thursday the 26th. I made a list three pages long of questions I had. I knew some of them wouldn’t be able to be answered just yet until we find out about my OB care.

So today we saw the pediatric cardiologist and got confirmation that our sweet baby boy has been diagnosed with Hypoplastic Left Heart Syndrome. We were able to ask a lot of the questions we had about his quality of life (which should be fairly normal once he’s past the surgeries) but mostly just confirmed the diagnosis and treatment plan which will indeed be the three part series of reconstructive open heart surgeries, starting when he’s born. We felt really comfortable with the cardiologist and his experience specifically with this defect. He currently has a 27 year old patient surviving with it and doing well. Right now our doctors and his surgical team are making plans for Huck, monitoring both of us, and we will find out more a little later around 30 weeks. 

The goal of utmost importance right now is keeping me pregnant as long as possible. So we’re praying the preeclampsia stays at bay this time and a full term baby boy. That will give Huck the best shot at his life. 

I posted today on Instagram and now here, but I put that I debated if and when to start posting about everything but we want to celebrate his life and my pregnancy with him just like we would have otherwise. I will still continue to do my updates every 3 weeks and more updates on his heart as they happen. We still have a lot of unknowns to face and a long road ahead but we appreciate any thoughts and prayers sent our way. 

Thank you so much to everyone that has known about this so far for keeping us in your thoughts. We feel surrounded by love and know that we’ll be bringing Huck into a world that loves him so much already. ❤️💙

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6 thoughts on “Huck’s Heart | CCHD Mama

  1. My thoughts and prayers are with you during this uncertain time. I wanted to give you some hope. My niece has HLHS, she turned 10 this past May. She has had 3 open heart surgeries and has been given a clean bill of health the last 3 or 4 years (meaning no more surgeries just yet). She cannot play contact sports but enjoys dancing and horseback riding. Hailey is an amazing little girl who has conquered so much! I do know my sisterinlaw went to a specialist in neonatal heart defects in Pennsylvania, and there are some amazing ones in Boston. I’ve had friends travel to give birth to be with the best of the best doctors when their babies are born. Not sure if you have a hospital like that in TX. I’m sure you are doing everything you can right now so just know I am thinking and praying for you, your family and little baby Huck. 🙏🏻🙏🏻

    • Thank you so much! It’s crazy how many people know someone with HLHS and we’ve heard so many good stories. Makes me feel confident that he’ll be one of those stories one day too. They said similar things for him, he won’t be an athlete or play contact sports, but we have plenty in mind we’re sure he’ll be interested in. We have several hospitals near us that have great experience with HLHS thankfully. Our own surgery team and pediatric cardiologist says they have about a 95% success rate with the three surgery series; their experience ranging over the past 25ish years.

      But thank you so much for the words of encouragement and prayers! ❤️

  2. Oh Jaime, I just now saw this. I’m not really sure of what to say but please know I will be thinking of you and your family. It sounds like you are in good hands and that treatment has come a long way recently. I’m sorry the OB office treated you that way. It may be worth a conversation to the office administrator. I just had to do the same thing with the orthopedic office I was at last week.

    • Thank you! We feel like we’re on a good path and we keep getting blessings placed in that path. We also keep learning about local kids that have HLHS and are doing so good! As for my OBs office, one of the women that treated me so terrible was the office manager 🙄 but I’ve let my OB know since he actually owns the practice so hopefully at the very least they’ll review their policies and procedures to prevent any other mom from being treated that way.

      Hope all is well with you and yours!

  3. Pingback: Huck’s Heart | April Update Part 1 | Southernly Ever After

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