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Robert and Melissa were preparing for the birth of their second child. Getting things ready at home for when they get discharged from the hospital which should have been a couple of days after Melissa gave birth. However, that did not happen. The planned C-section delivery was a success; however, their little baby boy had presented many complications within his first breaths of life.
During delivery the Dr had to remove “abnormal amounts” of fluid from this little boy’s stomach and lungs which was causing him breathing issues. The doctors made the quick and perhaps lifesaving decision to send the baby to sick kids’ hospital, which thankfully was the best at the time. Days went by, all tests and scans came back normal, to the medical staff at Sick Kids hospital, baby Williams was a big question mark. Two days after birth, a biopsy was taken to rule out a suspicion of “Hershsprung Disease”, With negative results, this provided a big relief but also a list of questions.
There were multiple teams of specialist’s that were now involved with Aaron's health and well-being. From respiratory, gastrointestinal, ENT, genetics and cardiac specialists, all tests you could think of was being done and coming back normal, not to mention, no real findings throughout pregnancy.
Just shy of a month old, baby Williams underwent his first major surgery, a laparotomy surgery with what the doctors thought he had “suspicion of malformation of gut" he exploratory surgery was completed and nothing was seen, no obstruction was found.
Baby Williams fought his was out of the NICU and moved up to General pediatric on October 6, this is where he was to spend his time recovering from surgery, working on his breathing support and feedings.
On October 7, blood samples from Melissa and Robert along with their sons were requested for further testing.
Every chromosome makeup of Aaron's was now being magnified and studied for any morphology. Approximately two weeks later, Melissa's whole world turned upside down.
Aaron was formally diagnosed with a rare disorder. Soo rare that Aaron was 1 of 7 surviving boys reportedly born with this condition. Vast majority of babies either die intrauterine or shortly after birth.
Aaron was diagnosed with “Osteopathia Striata with Cranial Sclerosis”, “OSCS” for short.
A month later a repeat laparotomy surgery that had been done back when he was a month old was being repeated, only this time something new had presented itself on imaging. The 5-hour surgery had revealed this baby’s pancreas had grew around his intestine, squeezing it causing reflux and intolerance for feeds. Since then he has not successfully progressed his way off of Bi-pap/ C-pap to just high flow. Aaron required the pressure to help him keep his airway open and also assist with the exchanges of gases. Aaron does retain some carbon dioxide which can be life threatening.
A recent family meeting presented Melissa and Robert with a few options. One being that Aaron have a tracheotomy with a ventilator and the other option is to have him palliate.
Our family is grieving this decision but will NOT give up on Aaron.
Currently Melissa and Robert are with their 2-year-old son living at Melissa’s moms home along with other family members. There is minimal space for what is required for Aaron as he will need special medical equipment along with accessibility for nurses or doctors to do regular checkups.
As the predicament worsens, it does not help that Robert is an American citizen that cannot work in Canada until paper work is processed. This holds them back from a second income as it is solely depending on Melissa.
Not only are we asking for help, but to also spread awareness of rare genetic disorders, mental health and wellness and using this as an outlet to spread and gain information about Aaron’s conditions.
During delivery the Dr had to remove “abnormal amounts” of fluid from this little boy’s stomach and lungs which was causing him breathing issues. The doctors made the quick and perhaps lifesaving decision to send the baby to sick kids’ hospital, which thankfully was the best at the time. Days went by, all tests and scans came back normal, to the medical staff at Sick Kids hospital, baby Williams was a big question mark. Two days after birth, a biopsy was taken to rule out a suspicion of “Hershsprung Disease”, With negative results, this provided a big relief but also a list of questions.
There were multiple teams of specialist’s that were now involved with Aaron's health and well-being. From respiratory, gastrointestinal, ENT, genetics and cardiac specialists, all tests you could think of was being done and coming back normal, not to mention, no real findings throughout pregnancy.
Just shy of a month old, baby Williams underwent his first major surgery, a laparotomy surgery with what the doctors thought he had “suspicion of malformation of gut" he exploratory surgery was completed and nothing was seen, no obstruction was found.
Baby Williams fought his was out of the NICU and moved up to General pediatric on October 6, this is where he was to spend his time recovering from surgery, working on his breathing support and feedings.
On October 7, blood samples from Melissa and Robert along with their sons were requested for further testing.
Every chromosome makeup of Aaron's was now being magnified and studied for any morphology. Approximately two weeks later, Melissa's whole world turned upside down.
Aaron was formally diagnosed with a rare disorder. Soo rare that Aaron was 1 of 7 surviving boys reportedly born with this condition. Vast majority of babies either die intrauterine or shortly after birth.
Aaron was diagnosed with “Osteopathia Striata with Cranial Sclerosis”, “OSCS” for short.
A month later a repeat laparotomy surgery that had been done back when he was a month old was being repeated, only this time something new had presented itself on imaging. The 5-hour surgery had revealed this baby’s pancreas had grew around his intestine, squeezing it causing reflux and intolerance for feeds. Since then he has not successfully progressed his way off of Bi-pap/ C-pap to just high flow. Aaron required the pressure to help him keep his airway open and also assist with the exchanges of gases. Aaron does retain some carbon dioxide which can be life threatening.
A recent family meeting presented Melissa and Robert with a few options. One being that Aaron have a tracheotomy with a ventilator and the other option is to have him palliate.
Our family is grieving this decision but will NOT give up on Aaron.
Currently Melissa and Robert are with their 2-year-old son living at Melissa’s moms home along with other family members. There is minimal space for what is required for Aaron as he will need special medical equipment along with accessibility for nurses or doctors to do regular checkups.
As the predicament worsens, it does not help that Robert is an American citizen that cannot work in Canada until paper work is processed. This holds them back from a second income as it is solely depending on Melissa.
As the plan to move to Robert's family home in Florida has now been put to a halt, they have no choice now but to reside in Canada until baby Aaron stabilizes.
All donations received will be to help transition Aaron in a calm and peaceful home setting. Along with a stable environment for Aaron and his medical needs upon hopeful discharge from the hospital.
All donations received will be to help transition Aaron in a calm and peaceful home setting. Along with a stable environment for Aaron and his medical needs upon hopeful discharge from the hospital.
Not only are we asking for help, but to also spread awareness of rare genetic disorders, mental health and wellness and using this as an outlet to spread and gain information about Aaron’s conditions.