Hi Jake! Our situation was similar to yours. 17 years ago our daughter was diagnosed preliminarily in utero with hypoplastic left heart. Then it became tetralogy of Fallot, then "a lot of defects." When she was born she had a bunch of defects that didn't have a syndrome. She had VSD, ASD (what you've mentioned) she had a double outlet right ventricle and coarctation of her aorta.
we were so grateful they discovered this while I was pregnant and it gave us time to research the hospitals and NICUs in our area. Do your homework and ask a lot of questions. Mended Hearts will have resources in your area.our daughter is now 17 and had open heart surgery at 5 days. It was exhausting and emotional, very difficult but not impossible! I wish you luck and blessings and you aren't alone. It feels like a lot right now and it is but just gather info, learn about the possible surgeries, and gather a tribe of family and friends who will see you through this.
Hi JakeI'm Dr "E"- at least that's what most folks call me because it's easier than pronouncing my last name!
I'm Chief of Pediatric Cardiac Surgery at Wash U and St Louis Children's Hospital.
I wanted to give you some reassurance because I recognize the fear and anxiety that you and wife feel. But here are the facts: 1. At 23 weeks, it is not feasible to accurately measure with 100% confidence the size of the aorta and subaortic area nor to predict the outcome in the long run.
2. Most babies that have a large VSD don't develop hypoplastic left heart syndrome, the sort of situation that leads to needing the Norwood procedure which indeed would be a major procedure. I think he or she was providing the worst case scenario but based on what you describe highly unlikely.
3. The vast majority of VSDs close during the 1st year of a child's life and some become small enough that are generally inconsequential. And as you heard in couple of the scenarios described below, it's a simple 3-4 hr procedure, a day or two in icu and typically home in 5-7 days.
yes your child will require life long follow up with her cardiologist but that's no different than a child with asthma, ADHD and so many other things that today we can treat and manage effectively with excellent quality of life.
Take a deep breath. Hug your wife. I think you guys will be ok. I obviously don't have a crystal ball nor know all the details but I'm sure your doctors are just wanting to be thorough.