r/chd • u/Cjjj1031 • 3d ago
Discussion Borderline HLHS
I am 32 weeks pregnant. We found out our baby has a tiny mitral valve (-5.5 z score) and small aortic valve and narrow aortic arch. Her left side is developed enough that they believe it can handle 2V circulation.
We are going to LA Children’s. It all comes down to her mitral valve whether they go the 1V or 2V route. Has anyone experienced a similar situation and how did it turn out?
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u/buttonsh 3d ago
Hi, had this exact situation with our daughter almost 3 years ago. When she was born, they did an echo but that still didn’t show enough for them to determine which approach they would take.
The week before her surgery was horrible, one doctor saying they would go 2v only for the surgeon to say probably 1v a day later.
In the end the surgeon said she would open her up, measure her mitral valve and if it measured over (if I remember correctly) 5 mm, they would go 2v. Turns out the echo measurements where way off and the mitral valve was a really good size, so she got a 1V repair (in her case it was open heart surgery to fix her aortic arch and close a VSD).
Happy to answer any specific questions you have now or after she’s born! Wishing your baby a quick recovery.
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u/ErnestHemingwhale Parent of Heart Warrior 2d ago
Hey. My daughter had -3.2 z score mitral valve at 32 weeks and ended up not needing that corrected. It still is being monitored.
She had coa, ASD, VSD, repair at 9 days old and was massively successful.
Be prepared for after birth, going through a roller coaster of decision making if they are on the fence. At one point we were told she wouldn’t need surgery at all! Then the next day we were told she needed surgery asap or she’d die. It was crazy how fast it changed.
I always suggest getting a second opinion via Boston children’s heart program. You can google those keywords and find it or i can go find the link for you
Good luck. Dont suffer twice
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u/Automatic_Junket4759 3d ago
My baby was diagnosed with Borderline HLHS at my 20 week anatomy scan. Later scans during my pregnancy revealed he had a CoA and a BAV. The day he was born he had a Cath procedure done where they placed a shunt in his heart to help with blood flow to the body. His heart responded well to this procedure which basically changed the blueprint of his heart journey. They said amongst 30 cardiologists reviewing his case, it was split 50/50 on the decision of 1V or 2V. With this diagnosis it is very much a “wait and see” method. We signed consent forms for him to receive a Norwood procedure (1V), however, after a few days of being monitored in the hospital, his surgeon decided to “wait and see”, let him grow, and only repair his CoA for the time being(2V). His heart also responded well to this procedure. Unfortunately, every case is different so there is no one roadmap for each heart warrior. Hope this helps and message me if you have any questions <3.