It started like all our other appointments of late...which is LATE. It has been par for the course that the more specialized the doctors, the longer the average wait time. This time though, it was because he was finishing up a surgery on a pediatric patient at another hospital. Enough said right there, we weren't about to sqawk about anything as serious as that.
Finally he came back to Hope and started seeing all these parents waiting to discuss their sick kids or babies (many women were pregnant) - by 3:30PM on a Friday afternoon his staff was looking for additional chairs to put out in the waiting room. Eventually it was our turn to be seen and I couldn't be more thrilled with the results. He's a wonderfully warm man, that I can't say enough about. He drew us diagrams of the normal heart and then an overview of Olivia's to show how the two differ.
We went in depth into the first procedure traditionally known as the Norwood, step by step and he was happy to answer our questions the entire way.
Here's how it will play out:
- I will go into labor naturally and deliver Olivia at Advocate Christ Hospital
- Shortly thereafter the Peds staff will take Olivia to the NICU for evaluation and to put her on an IV of Prostaglandin (synthetic hormone meant to mimic in utero and keep her ductus open) until she's ready for surgery
- Olivia will undergo a chest ultrasound and MRI to review precise measurements of vessels and heart structure to determine surgical plan
- Brian and I, as well as family over the age of 18 will be allowed to visit her as much as we want in these days leading up to surgery
- Day of surgery, she will be intubated and taken down to the OR - prep for the surgery will take about an hour
- Surgery itself will be approximately 2 - 2 1/2 hours
- Dr. Ilbawi and his staff will stay in the OR for at least an hour after the surgery to review her vitals and make sure that she is stable before they bring her back up to NICU or PICU
Since most of these babies swell a fair amount during the surgical procedure, they feel it best to leave their chest cavities open for the next 72 hours to allow for the swelling to go down. In my opinion this is best anyway because it also gives them a little time to make sure that her O2 stats are where they want them to be. Sometimes the size of the shunt used during the procedure can be too big or too small and they have to go back in and change the size. Since they haven't officially closed the babies chest, it makes it less invasive.
Our fears of complications regarding her being placed on bypass seem to be unfounded. Dr. Ilbawi said that his patients have not had neurological issues following the use of bypass, in fact thus far the only real complication that they have seen is when the surgery itself is just too great of a stress on the heart and the babies have a hard time being weaned off the bypass at all. In that case they will put the babies on ECMO (which is a machine that they are hooked up to that will help oxygenate their blood while it gives the heart a chance to recover from the surgery).
While the national average survival rates for this first round of surgery are between 70's-85%, Hope Hospital has a rate as high as 92%. This accounts for all cases - even the worst ones where the parents didn't know the diagnosis until they were home and brought their babies back in cardiac arrest. We are very comforted by these numbers and more importantly by the man himself. He reviewed all the information on Olivia's case and feels that she will do really well because this is her only complication/defect and she has a reasonably sized aorta compared to many of these other HLHS babies. The best news of all is nothing can get worse with this condition for the rest of my pregnancy, in fact things can only improve. I am grinning as I type this because it still makes me so happy to think of things getting better as we continue on.
I don't mean to belittle the extent of the HLHS, it is by far the rarest and most complicated heart defect with survivable options; but it is clear, Dr. Ilbawi with his over 30 years experience has seen and done a lot in the world of these tiny heart patients and that is a wonderful comfort. His optimism for Olivia and her future was just awesome.