Ollie Ollie Oxen Free
Ollie was born with a Urea Cycle Disorder (one of several) called Ornithine Transcarbamylase Deficiency (aka OTCD), a metabolic disorder. What this means, put simply, is due to a defect in the urea cycle in his liver, he cannot tolerate protein, and this causes his ammonia levels to rise to potentially fatal levels. His journey started (strangely) with hypoglycemia, which, as of yet, we have been unable to determine any correlation between OTCD and hypoglycemia. It became untreatable where he was born (CCH) and he was transferred to Tufts in Boston where they treated it somewhat successfully. However, two days into his stay at Tufts, after noticeable alterations in his respiratory pattern, Tufts discovered his ammonia level was 745. Normal range for infants is 16-47. He was in crisis, and was transferred to Boston Childrens Hospital, where within 2 1/2 hours of Tufts finding that lab value, he was put on dialysis to filter the ammonia out of his blood, intubated, and put on more meds than I have ever been on in my life, the most important of which (Ammonul, an ammonia scavenger) costs $70K+/bag.
More about OTCD here:
Ollie was critically unstable, and John and I were told the next morning that the next 24 hours would tell us whether or not our son, now 6 days old, would survive. He was basically comatose, not moving, not opening his eyes, silent, with a strange breathing pattern (possibly caused by brain damage the extent of which we had no clue of at the time). In addition to all of that, he suffered a seizure episode due to the high ammonia levels, further exacerbating any potential brain damage. We had him baptized in his incubator crib, because we did not know if he would live to see the next day.
Fortunately, the team here at Boston Childrens was able to save his life, and a week and a half later he FINALLY started to move by himself, open his eyes, grip our fingers, respond to touch and, the best thing, cry. We finally heard our son after more than a week of silence.
Today, St. Patricks Day, his last IV was taken out and, though he still remains on an NG tube feed (he can eat by bottle, we just HAVE to be sure he gets the appropriate nutrition, on time, exactly), and we can finally walk around the room with him. He looks and sounds like a "normal" baby (you wouldn't know he has an illness just looking at him), and I am grateful for every fuss. No matter the outcome, we became prepared to give our son the best life he could have. I will never forget the silence of our son.
My pregnancy was unremarkable, and there was no way to predict this. I had all the appropriate testing done, I had all the usual visits, everything was normal. But as soon as the umbilical cord was cut, Ollies ammonia was rising because the protein we were feeding him (through breastmilk and bottle) was no longer getting filtered through my liver (though I do have a much more mild form of the same disorder myself as it turns out).
With OTCD, the component in the urea cycle that helps process protein, a particular enzyme, is virtually not there, especially in Ollies case. Because of this, if he has any protein, it will not get filtered and his ammonia levels will rise to potentially fatal levels. Unless Ollie undergoes a liver transplant (which is very likely in his future) he will be on medications and a very specific no-protein diet for the rest of his life.
OTCD is listed on the National Organization of Rare Diseases. It is one of those "invisible illnesses" that no one will ever see. Ollie will be given a card that will enable him to be triaged at the ER immediately, should we think that he is getting sick, or there is a possibility that his ammonia levels are high. So when you see something like that happen at the ER, know that there is a good reason for it. If Ollies ammonia levels rise, it has the potential to cause brain damage, or kill him.
Boston Childrens Hospital has done so much for us, including providing us a place to stay while Ollie is in the NICU (where he still remains, as well as he is doing now). The teams here have been beyond phenomenal, and I could never have asked for more as far as treatment for our son goes. He will be followed, probably for the rest of his life, by the metabolic team here and for that I am eternally grateful.
Because of the very personal nature of everything going on, and having to answer so many questions about so many things we have limited awareness of our situation to a very few people until now. But I hope, if you cannot walk with me, that you will share when I do post the fundraising page for the hospital, and donate if you can. We almost lost our son, and because of the dedicated doctors and EXTRAORDINARY nurses here, who I have learned so much from, our son is alive.
Because of the very personal nature of everything going on, and having to answer so many questions about so many things we have limited awareness of our situation to a very few people until now. Ollie's team name comes from the childrens catchphrase that indicates it's safe to come out of hiding during a game. It became time for us to come out of hiding and share Ollie's experience, raising awareness of not just Urea Cycle Disorders, but everything that goes along with having an "invisible illness". I hope, if you cannot walk with me, that you will share when I do post the fundraising page for the hospital, and donate if you can. We almost lost our son, and because of the dedicated doctors and EXTRAORDINARY nurses here, who I have learned so much from, our son is alive.
Boston Children's Hospital is ranked #1 in more specialties than any other pediatric hospital by U.S. News & World Report. Here are a few reasons why:
- The hospital's patient care programs provide the best, most innovative care possible.
- Researchers regularly make amazing discoveries that change children's lives.
- Boston Children's welcomes kids whose families can't afford health care--more than any other hospital in Massachusetts.
- Community programs makes a point of reaching out to help low-income and at-risk kids.
And the hospital doesn't just stop there. Boston Children's really understands the importance of training the next generation of top pediatricians and nurses.
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