Mine was given a 50/50% chance or survival and an 80% chance of moderate to sever impairment at the time of his birth.
Current stats have him at 48% survival, 70% profound impairment, so I guess not much has really changed in 16 years. We were lucky to be in that 17% who are not moderately to profoundly impaired.
Mine was so into Harry Potter way back when that I had to become a Harry Potter expert to ward off the “Harry Potter is Evil” hysteria that was popular at the time. That was a difficult time because of his excessive, consuming interest.
My son is mainstreamed (no special educational programs since 5th grade) and likes music, chemistry and writing. He’s quirky and is slow to process information, but is also bright and has a remarkable memory. He loves classical music most and listens to it ‘in layers’- for example, all the violins, then the same piece where he focuses on all the cellos or all the bases or all the whatevers. Then he listens to all the background noise such as clunking of chairs or bows last, and loves, loves, loves to find odd noises.
He is getting a complete neurodevelopmental exam at UT this year in anticipation of going off to college in a couple of years. Many colleges have support programs for kids with various diagnoses, but a recent (4-5 year) full exam is needed to access the programs.
Yep, that’s about in line with what our hospital’s ethicist consult said. “At 23 weeks and zero days, it’s 25% survival. At 25 weeks and zero days, 75%. We don’t have numbers for 23 weeks and 6 days, but let’s split the difference and call it 50%. Either way, of those that survive the birth, they have a 70% chance of having some short or long term disability. Girls fare a little better than boys.”
We rolled the dice and won. My heart aches for those who didn’t have successful outcomes.
And we also had that discussion about DNR and if they would stop treatment when I said stop, if things got too scary. They assured me they would, and I trusted them. That was probably a bit niave, and in today’s heroic medicine environment, I should have gotten some assurances in writing, but it’s not exactly a moment in time when you’re thinking clearly.
Our outcomes conversation after I requested the DNR was pretty in-depth and involved many people- my spouse, the OB-Gyn, a neonatologist and the hosptial lawyer (Or two? I don’t recall now) were all present and some other folks, too. Probably a nurse and/or the charge nurse and/or unit director. The room was pretty crowded.
A couple of years later, I called them to review my chart. I was looking for some detailed information for a developmental exam. I was very, very surprised to see this one sentence in my chart regarding the meeting: “Pt opts for full resuscitation per discussion” or some such phrasing.
That is not what I took away from that conversation. My impression was that I really didn’t have much say in the matter.
I’m pretty sure they were covering in case there was a lawsuit later. The place where I delivered had recently lost a large (45-60 million dollar) wrongful life suit. I actually watched this news story while in the hospital pregnant with my son! I believe Reagan’s ‘baby doe regulations’ also played a role.
I don’t have a dog in that fight, but it really does highlight the difficulties of being born in ‘the grey area’ and what laws and ethical issues do or do not apply. And, of course, I’m glad that we had a good enough outcome to not make me feel like I needed to walk down that path.