Good news first. Today I had an ultrasound and Zoe is following in Londyn's BIG footsteps. She weighs 3lbs. 7oz. and her head is measuring 3.5 weeks ahead of schedule. I am so relieved that her growth is right on track and hasn't been affected by her heart condition.
Now for the other news...
The fetal echo and ultrasound showed that Zoe has developed AVSD, Atrioventricular Septal Defect. AVSD occurs in about 5% of patients with congenital heart disease.
There are three categories of AVSD, complete, partial and transitional. Zoe has a complete Atrioventricular Septal Defect, also known as a "common AV valve". Rather than having two separate mitral and tricuspid valves, Zoe has only one valve over a large whole between all four chambers. As a result, the heart has to work even harder than it already is with the HLHS to get blood to the lungs and rest of the body. What does this mean for Zoe's specific case? I honestly don't know much but the Pediatric Cardiologist said that the common AV valve will only be a problem when it begins to leak. If it does leak before she is finished with the 3-part surgeries, Zoe would no longer be a candidate to continue that plan of treatment and would then only have the option of a heart transplant. We always knew that after the 3 surgeries, a heart transplant would most likely be in her adult future but now my biggest fear is that she will need a transplant as an infant or in her younger years. A heart transplant is her only backup option for success and if she can avoid a transplant until adulthood, she has a better chance of a longer lasting heart.
Normal vs. Zoe's heart:
Hypoplastic Left Heart Syndrome with Atrial Septal Defect
Thankfully, she is still perfectly safe and protected in utero. I really don't know how to respond to this new discovery. I have known since the beginning that things could change and further develop... but I guess I was naive about the reality of her condition actually getting worse. There is nothing we can do at this time... just more waiting, more nerve-wracking appointments and more unknowns.
What a day...