From June 16 (NICU discharge day) to the end of 2023, Beckett had approximately 40 appointments relating to his medical conditions. These included appointments with: the Feeding Team, home nutrition, general surgery, nephrology, neurology, neuro surgery, neonatal follow up clinic, ACH vision clinic, genetics, B’s paediatrician, and his physiotherapist. It also includes a handful of appointments for imaging (MRI, ultrasounds). In my tally of appointments, I didn’t include appointments for his head shaping helmet, since this intervention is not considered medically necessary and was something Keith and I chose to proceed with knowing that Beckett would not be developmentally or medically impacted one way or the other.
Most of the summer appointments brought a lot of optimism. With the help of the Feeding Team, and hard work at home, Beckett proceeded to wean off of NG tube feeds by July 18 and he has been eating orally from that day forward. His paediatrician’s original assessments were that Beckett suffers from reflux, but that his movements appeared normal to her, which Keith and I were so relieved to hear. We had surgery follow up every 2 weeks in order to proceed with anal dilation - the goal was to get up to a Hagar size 13 bum hole by the time Beckett was 1 year old, starting at size 7 two weeks post surgery. Since he had his surgery at such a young age, there were no concerns with getting to this size - we had lots of time to work our way up to it. (The dilations were required in order to ensure that the bum hole didn’t get too tight and close up - since it had been sutured in a circle, and because newborn baby poop is so liquid, without dilations the surgical area (aka, the bum bum) would naturally heal tighter and tighter. Once solid foods are a significant part of the diet, the bum bum would naturally dilate from the other direction….) The surgeon was continually impressed with her work, regularly stating “that is a nice bum hole” at each follow up appointment. Honestly, the number of doctors that have looked at this kid’s bum hole… it’s too bad he can’t have more privacy, but at least he gets a lot of compliments, I guess (such as “he’s got a good pucker” - from the neurosurgeon).
In September, we got Beckett’s genetic test results back. We were informed that he has something called “Currarino’s Syndrome” which is a genetic mutation of the MNX1 gene. B happens to have the full “Currarino’s triad”: anorectal malformation (ARM), sacral bone deformation, and pre sacral mass. Having already had surgery to correct the ARM, no further severe complications are expected on that front. The sacral bone deformation (scimitar sacrum) also correlates to Beckett having a low lying conus - this was confirmed with an MRI - meaning that the nerves come out of his spinal cord at a lower vertebrae than what is considered normal. The long term impacts of this is unknown, but somewhat optimistic: the neurosurgeons we met with have said that 90% of the time, people with low lying conuses are unaffected, and the other 10% need surgery to “untether” their spinal cord if the nerves become too stretched (or “tethered”) as they grow. We have our fingers crossed that Beckett will not need surgery, but we had (and continue to have) concerns that the low lying conus will cause mobility issues in his legs, when we already knew his HIE puts him at risk for mobility challenges, and it may become complicated to know what the culprit is of mobility issues in the lower half of his body…
Fall came around, and Beckett’s appointments became less optimistic.
In October, we went to the neonatal follow up clinic (NNFC), where Beckett saw a physiotherapist and a neonatologist. We honestly didn’t know what to think going into this appointment, but I remember feeling pretty hopeful since all of our other appointments had been going pretty well. The neonatologist was first, and he did a HINE assessment of Beckett. There was a Fellow in the room as well, and the neonatologist directed most of his comments to the Fellow as if Keith and I weren’t present - or perhaps unable to understand any medical information? He said things in a most insensitive manner (“his tummy time is lacking”, “he shouldn’t be doing [insert any type of reflexive action] anymore”, “he should be sitting”). On and on he went, speaking to the other doctor. He also didn’t listen to Keith and I. When asked if Beckett knew how to roll, Keith and I both confirmed that Beckett had been rolling back to tummy, tummy to back in both directions for a number of weeks. The doctor wrote down that Beckett “does not roll”. Cool. The neonatologist left and said he’d come back after the physio had completed the same assessment and would let us know the results. The physio did the same assessments, and quite honestly seemed disappointed in Beckett’s abilities, or apparent lack there of. When the neonatologist came back they both quickly reviewed their assessments, and a previously completed General Movements Assessment (GMA), and told us that Beckett was considered high risk of developing Cerebral Palsy. Very little was offered for support at this time. Because Beckett was considered medically stable, they could not offer him physio through the NNFC. They could refer us to Pediatric Community Rehab (PCR) for monthly physio, most of which would be through Zoom, and the referral would take at least 6 weeks. From research that I had done, I knew that early intervention is key to improved outcomes for children with CP, so these options seemed pretty crappy. Not only that, but the neonatologist, perhaps in an attempt to be compassionate, thought that the best way to wrap up the appointment would be to give me a pathetic pat on the shoulder and say “sorry Mom”. I wish he knew that pity is not the same thing as compassion. I wish he knew that the best thing for Beckett was his parents to remain optimistic, and to be willing to work hard to help Beckett reach his potential. In that one appointment, the neonatologist dismantled the hope I had been building since bringing Beckett home, and it took quite a few weeks for me to move past that experience.
Following the NNFC, we got Beckett into private physio at the Canadian Centre for Development (CCD). I plan on writing a separate post about physio, so I won’t go into too much detail yet. The team at CCD are kind and caring, and they focus on abilities rather than disabilities. They challenge Beckett at every weekly appointment, they try to make the appointments fun and interactive, and they cheer him on and give us hope for his future. We’ve seen him make a lot of progress.
At the end of November we went back to the NNFC to see a different neonatologist and the same physio as before. They completed the same assessments, and this time the neonatologist decided to formally diagnosis Beckett with CP. At 6 months, it was an early diagnosis, but the doctor wanted us to be able to apply for provincial funding for physio, OT, and other aids, which we appreciated (we’ve applied, but have yet to receive any). For Keith and me, the diagnosis didn’t really change too much on our outlook - we would continue to take B to CCD for regular physio, and the NNFC would refer us to other specialists in the months to come. In a sense the diagnosis was just giving us more tools in our toolbox.
In December we decided to move forward with a head shaping helmet, since Beckett had severe plagiocephaly (lopsided head) and moderate brachycephaly (flat head in the back). This is certainly not a medically necessary thing to pursue, but we thought it would be beneficial to Beckett, especially given that he was still spending more time on his back than other babies his age. When we went in for the first fitting appointment, the clinicians asked us how we were feeling for the “big day”. Keith and I hadn’t thought much about it, since Beckett had just been diagnosed with cerebral palsy, something that would impact all of our futures forever, the helmet was not a big deal for us. I’m glad that we chose to do the head shaping helmet, and I’m sure it is a big deal for a lot of people, but for us, it was just a few more appointments in what was already a very busy calendar.
So, 2023 had highs and lows. 2024 has so far been a bit more of the same. We continue to do what we can to help Beckett reach his potential, and also love and support him. B continues to amaze us and show his strength and determination. He also continues to look adorable, both with his helmet on and with it off. More to come in future posts.
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