We have completed a day of appointments at Sick Kids and Mount Sinai hospitals here in Toronto – and what a day! My head is still whirling and fuzzy from the information overload and the changes in our diagnosis. Jacob now has a new diagnosis – it is NOT Hypoplastic Left Heart Syndrome. Jacob’s new diagnosis is Double Inlet Left Ventricle (DILV) – it is still a single ventricle diagnosis, but the overall prognosis is about 10% better than it was with HLHS. Essentially, Jacob’s left ventricle is normal sized and functioning well, but his right ventricle is small and not functioning normally. I will post a technical explanation and diagram too. DILV is even rarer than HLHS – the fetal cardiologist told us that at Sick Kids they might see 1-2 cases/year. It is not genetic, and there is no known cause. DILV occurs is about 5-10 of 10,000 live births. That’s the good news.
The other news is that Jacob still needs the 3 stage Norwood surgery and although the initial surgery will be slightly different it is at the same risk level as originally thought. So, we are still facing surgery in the first week of life, at 5-6 months and at 3 years – all at Sick Kids. I am feeling thankful for the new diagnosis, because anything that gives my boy a better chance at life is wonderful. At the same time, Jon and I are feeling slightly devastated by a new statistic that was introduced by the fetal cardiologist – We were told that approximately 75% of children with DILV live past the age of 10. With HLHS, that number is 65%. 3 out of 4 – I guess those are good odds? I can’t bring myself to even consider the 1 out of 4 option. I don’t know if I would survive that.
Sick Kids itself is an amazing hospital – and I say that after having spent only one day there talking to the doctors, nurses and social workers. The level of care that we received today was phenomenal, and each specialist took a large chunk of time to do the assessment, and then sit with us afterwards to discuss the results and answer any of our questions. We left the hospital today with the cards for the fetal cardiologist, the fetal heart nurse, the obstetrician and the social worker – and with assurances from each one that we could email or call anytime if we had questions or concerns.
But right now…all I want is to hold Georgia and kiss her sweet face. I want to take my time playing with her, and talking to her and to ignore the mess of the house or the busyness of work – that is completely not a priority for me now. I just got a virtual hug from her thanks to Skype, but tomorrow I’m going to squish her when I see her at the airport.
Please, please, please keep praying! There is a long road ahead for baby Jacob, but I still believe in my heart that he will make it and will have a relatively normal and happy life – for however long we are blessed with his presence.