Patient of the Month- August B.
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My name is Mercedes Bartholomew and I am writing on behalf of my son August Bartholomew. My husband, Bryce, and I found out we were pregnant in January of 2020. A few months later COVID hit, but it didn’t stop us from going to all the appointments together, doing a pregnancy announcement, and having a gender reveal party. When I was about 18 weeks Bryce deployed overseas, but not without going to our anatomy scan first. A few weeks later I went in for a regular OB appointment and that’s when we found out something was wrong- August’s limbs were measuring between 8-11 weeks behind. We chose not to panic as my OB said that it was possible that August would just be a little person, but for the sake of being proactive I was referred out to a hospital for monitoring.
A couple weeks later I arrived at my first appointment with a maternal fetal medicine doctor at the hospital. After doing an ultrasound the doctor sat me down and proceeded to show me everything he was seeing: severe skeletal dysplasia, fractures, breaks, and missing bones. They recommended an amnio immediately and from that point on I saw a doctor every week until I gave birth. Bryce came home early from deployment, we were transferred out to yet another hospital that was more equipped to handle difficult pregnancies, and we received the amnio results which confirmed that August has hypophosphatasia.
Sadly, our hopes of a short hospital stay were immediately crushed. August was on heavy pain meds, he got pneumonia early on, and his anatomy wasn’t able to support a tracheostomy. Bryce and I traveled back and forth between home and the hospital for four months, and during this time we were forced to begin the process of turning our lives upside down as August was getting “too old” for the NICU we were in and because they would never release him home to us because we lived too far in the desert. After securing new orders for Bryce, August was transferred to Rady Children’s in San Diego at four and a half months old.
Upon arriving at Rady’s, August was able to see our faces without masks on, we were able to hold him more, and we could all be in his room at the same time whereas only one of us could be with him at his other hospital. Bryce and I were still commuting because we had yet to secure housing so we still only saw August on the weekends. About a week later we scheduled his tracheostomy and g-tube surgery and he ROCKED IT. After getting the trach and g-tube he became so much more active. He was able to tolerate sitting up, we could finally put clothes on him because he didn’t have as many tubes, and he was always smiling. Without the tube in his mouth he was always making faces, laughing, sucking on his binky, and he would go crazy for little bits of breastmilk that we would drop in his mouth with a syringe.
At seven months old we discovered that August’s skull was fusing together prematurely due to the Strensiq working its magic. We talked to neuro and plastics extensively to make a plan to correct his craniosynostosis in the most efficient way possible. August went in for surgery and had steel plates attached to both sides of his skull after the bone had been cut apart again. A small metal rod stuck out of his head at his temples and we turned them with a little screwdriver about a millimeter every day for a month in order to slowly push his skull back and give his brain more room to develop. He had these plates and rods removed about three months later.
At seven months old we discovered that August’s skull was fusing together prematurely due to the Strensiq working its magic. We talked to neuro and plastics extensively to make a plan to correct his craniosynostosis in the most efficient way possible. August went in for surgery and had steel plates attached to both sides of his skull after the bone had been cut apart again. A small metal rod stuck out of his head at his temples and we turned them with a little screwdriver about a millimeter every day for a month in order to slowly push his skull back and give his brain more room to develop. He had these plates and rods removed about three months later.
When August was eight months old, he graduated from the NICU and was moved to the pulmonary floor where we would start the process of learning to take care of him on our own. Bryce continued to drive back and forth as he still had to work and I stayed at the hospital with August full time. At that time, Bryce and I had already been taking over all of August’s cares solely on our own. We even got to take him outside for the very first time in his very own stroller. He passed his car seat test on the first try, we set up his room at our new house, checked everything off our learning lists, booked our families flights out to California, and on June 17th, after nine months in the hospital, we brought August home.
Around his first birthday we discovered that August could not hear. At all. After running several BAER tests, it was confirmed that he had profound hearing loss. We were shocked. It seemed like he could hear us when we walked in the room, sang to him, played music, and he’d laugh so hard when we would clap, but sadly he hadn’t been hearing us at all. Christmas thankfully came early that year and on December 14, 2021 August got his hearing aids. His hearing continued to improve slightly as his ear canals developed and opened up, but to this day he still has severe hearing loss.
Today, in 2023, August no longer uses his vent or g-tube and is set to have them removed after he passes his sleep study, he wears a cap on his trach all the time, crawls all over the house, has taken some independent steps, eats everything by mouth, babbles our ears off, has taken several plane rides to see family and travel, he’s finishing up his first year of preschool, loves bath time, understands and uses lots of sign language, loves learning how things work, has lost three teeth, still watches Monster’s Inc every day, and is the happiest kid you will ever meet. Throughout every surgery, injury, illness, set back, and everything life has thrown at him August continues to smile and laugh and thrive. I’ll never know how Bryce and I were lucky enough to become his parents.
For a more in depth detail of August’s journey with Hypophosphatasia, you can follow us on facebook at “August’s Journey with HPP” and on Instagram at “August’s Journey with HPP” or “august_bartholomew_hpp”. These are pages we have had since August’s birth and we continue to keep his pages active and updated. We would like to extend our heartfelt gratitude and thanks to Soft Bones, Loma Linda University, Rady Children’s, all of our doctors and providers, Alexion pharmaceuticals, our families, our military community, our friends, and everyone who supports August in any way. We couldn’t have made it on this journey without you. Thank you for loving our boy as much as we do.
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