Before Anabelle was born, I actually had very little interaction with doctors. My only hospital stay had been after giving birth to Elyse. I had one surgery on my hand in 8th grade when I cut through a tendon in my finger. I saw the gynocologist once a year for my PAP smear (anyone else gag on that term a little? Sounds so gross! SMMMMEEEEAARRR. BLECH!). Haven't seen my primary care doctor in years. And it had never even crossed my mind to question anything a doctor told me. They were the doctor. They had way more schooling that me, especially in the sciences, and whatever they told me was what it is. Follow their directions and you get better.
For those of you who are not special needs parents, I'd like to share a little secret: Doctors don't know JACK! ESPECIALLY if it is outside of their field. IN their field, they MIGHT be geniuses (and I will present some evidence to the contrary in a moment). But if you have a headache, don't go to the podiatrist. I have a good friend who is a cardiologist. I would put my heart in his hands (literally, if necessary). But when Brian cut off the tip of his finger and this friend came to the ER (which was very sweet of him to do), he kind of hovered around going, "Hm, not really sure what they're going to do." LOL! (P.S. the answer was "nothing". Bandaged it up, sorry about your finger, dude, come back next week and we'll close up the wound.)
When you have a child with a rare diagnosis, even the experts in their fields may have never met another child with this condition before, and some of them turn into idiots. Anabelle was transferred to the NICU at A. I. Dupont hospital for children the day she was born. Three days later, after an MRI, we were given the diagnosis: Microcephaly with simplified gyral patterns. (Here I would like to add that this diagnosis has been changed or altered at least half a dozen times since that day: "Microcephaly with simplified gyral pattern group 5", "Lissencephaly with cerebellar hypoplasia type d", "cerebral palsy"-added by the orthopedic doctor, "reduced white matter volume and impaired myelination", "hypoplasia of the vermis, cerebellar hemispheres and brain stem", "hypoplastic optic nerves"-added by the eye doctor, "lissencephaly type 3-TUBA1A mutation"-added after the genetics testing, and so on and so forth, ad nauseum).
The day after this diagnosis, as I stood staring down at my tiny (and I mean tiny! 5lb, 12 oz, WAY smaller than her sister!) baby and trying to process what all of this new language meant, the head neonatalogist on the floor came and stood next to me. Now, I will say that despite the story I am relating, we actually really liked this guy. He was probably our favorite attending in the NICU throughout our stay (they rotate every two weeks). I turned to him and asked if we were in any immediate danger of losing our baby. He said no. Then I asked if we should expect her to live a full life, to be 80 or 90 years old. I will never forget his exact words, "Well, I'm not sure about 80 or 90, but there is no reason to think she won't make it to 60 or 70." At this point, all of you liss parents are making that disgusted nose snort noise. For those of you who may NOT know, lissencephaly comes with an extremely shortened lifespan. If you try to research it on the internet, most of what you will read will tell you that the patient will not survive their second birthday. Blessedly, this is not really the case for many of our kids anymore (although still is for an unacceptable number of others). I know many kids in the 10 and under age group, a healthy number in their teens and a handful in their 20's, still doing great. There is even word of the magical Roberta, age 41 and still going strong under the exhaustive care of her mother Isabel who has made it her life's work to find a better form of seizure control. She is our matriarch and guiding light. But there is not one person whom I have ever heard of who has lived into their 60's and 70's. I don't know if that doctor was simply completely ignorant about her diagnosis, or if he didn't want to have to be the one to tell me that I was (most likely) going to have to bury my child one day. Either way, he gave me false hope (and false stress, as I tried to imagine what on earth will become of her once I am gone) for a good few weeks until I could finally bring myself to research the diagnosis on my own.
A few days later we asked for a meeting with the neurologist who was handling her case (and who still is her neurologist today). We told him we understood what we had been told about her condition (sort of), but just wanted him to tell us what we should expect from her developmentally. He kind of hemmed and hawed around for awhile, but there were two things we specifically asked. 1) would she know us as her mother and father. He said yes. I guess he was right, but not in the way that I envisioned at the time. I was envisioning someone saying, "Anabelle, where is your mommy?" and her either pointing to me or looking at me or SOMETHING. Not even close. She does appear to differentiate between the voices of the people who are around her the most: me, Brian, Elyse, the day nurse. But she does NOT understand the relationships. She just knows that we are nice people who pet and kiss her. 2) we asked if she would walk. He gave her a 50% chance of walking by the age of three. Now, I know that she is only 16 months, but the kid doesn't even support her own head, so I'm pretty sure that was a little bit of a long shot. Not sure the odds were ever that good.
At the age of one month, Anabelle was getting a gtube implanted in her stomach so that we could feed her, as she was not able to drink from a bottle. The day before the surgery, the surgeon came to see me to explain the procedure, and he says to me, "Now, I don't want to say that 100% of the time, nothing goes wrong, but 99.999999999% of the time, nothing goes wrong. This is a totally routine surgery." He then proceeded to perforate her stomach lining during this "routine surgery" and not realize it, and the mistake was only discovered a week later after she almost died. It necessitated a second, open belly surgery that prolonged her hospital stay by another month. Once nice thing about a surgeon almost killing your kid? You get his cell number and he pulls whatever strings you want with any other department in the hospital, even if it's not surgery related.
At the age of three months (after only a month at home post-NICU), Anabelle began vomiting with every feed. After a nine day hospital stay, the plucky intern came and told us they couldn't find anything wrong, and that they were thinking this was just her neurological baseline. I looked her in the eyes and said, "Look, "Dr. Abby", I know you've had about 5 more minutes of med school than I have, but I pretty sure puking is not a neurological symptom." They discharged us anyway. Two weeks later I got her in to see a GI doc affiliated with another hospital (who, by the way, is an angel sent straight to Anabelle from Heaven. He has literally saved her life on numerous occasions) who immediately switched her to a prescription formula and reduced her feeds (since her pediatrician had us feeding her as much as a healthy, active baby who had NOT had TWO abdominal surgeries). The vomiting ceased immediately. P.S. On Anabelle's next hospital stay 10 months later, Dr. Abby was now the nighttime on-call resident for the ward, bless her plucky little heart! She had NOT forgotten us! LOL!
Well, I could go on and on, but I think you all see where I'm going here. My view of doctors has DRASTICALLY changed in the past 16 months. I am now more inclined NOT to trust what they say than I am to trust it. I follow up every recommendation with my own research, with discussions with other liss parents, and sometimes with second opinions from other (possibly equally as untrustworthy) doctors. In case you were wondering, that is the kind of thing that is the time-suck that leaves me unavailable anytime you ask if I can do something. However, I will say that I am probably a lot less likely to die from a medical mistake than the rest of the world, since I just assume that everything any doctor tells me is a mistake until I verify it independently!
Live and learn