Get Martin to Colorado

Get Martin to Colorado

From Emily Jean Desjardins

My son, Martin, was born with a rare congenital defect that has rendered him incontinent at 6 years old. We desperately need to relocate to Colorado so that he can get treatment from the colo-rectal specialists there.

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Update #1

25 days ago

Hello all!
My husband's flight, hotel accommodations and rental car for Colorado are officially booked. He will be flying out ahead of us on April 3rd. He needs to meet with our realtor to view some properties around the Aurora area and try to find a starter home for us. He will also be interviewing for jobs and meeting with Dr. Pena to make sure he's received all Martin's records and can start a care plan at the hospital. Hopefully this process will take less than 4 weeks. In the meantime, I will be here with Martin trying to pick up as many shifts as possible to try and offset some of the cost of Anthony's travel. As soon as he is able, he will be flying back to Maine. We'll then take all of our stuff out of storage, put it on a truck, and embark! I will keep you all posted on our progress. Please keep sharing and updating your friends and family! If this fundraiser goes any higher, we might actually be able to afford some furniture or a car when we get there, which would make life so much easier. THANK YOU ALL!!!!

More Info

Our son, Martin, was born July 16th, 2012 after a full term, healthy pregnancy. All his ultrasounds were beautiful, and no one knew anything was wrong until he was examined for the first time. The doctors discovered that Martin was born with a 1 in 40,000 condition known as VACTERL or Caudal Regression Syndrome. This condition can, and often does, affect 3-7 different bodily systems. It stems from Sacral Agenesis, which when the bottom of a baby's spine does not form properly. In Martin's case, he had hydro-nephrosis of the left kidney (excess fluid), a tethered spinal cord (when the spine and spinal cord are attached) and, the most difficult part: imperforate anus. Imperforate Anus is when the rectum does not form and attach to the outside the way it was meant to. Martin has a rectum, it just never grew to form a hole. So he had a perfect little bottom, but no hole, for lack of better terminology. Martin spent the first 5 day of his life in the NICU at Eastern Maine Medical Center in Bangor Maine, recovering from a colostomy placement. As his mother, I was completely devastated, blamed myself, had no idea what to do besides delve into his condition to research and find out all I could do to help him. I obtained copies of all his medical records, and contacted a pediatric neurologist in Portland Maine. In November 2012, at 4 months old, Martin underwent spinal surgery to have his spinal cord detached from his spine at Maine Medical Center in Portland. As terrifying as it was, the surgery went well and Martin was soon on the mend. At this point we were in the care of Dr. Jeffrey Halter, a general pediatric surgeon at Maine Medical Center. His plan was to do the Pull-Through Procedure for Martin around 6 months of age. In my research I realized that because of the rarity of this condition, there are very few surgeons in the country who have performed it more than a couple times. It is a relatively modern procedure developed by Dr. Alberto Pena. This made me extremely apprehensive about the procedure. At our appointments prior to scheduling the surgery, I asked Dr. Halter several times about his past experience with it. He gave me vague answers about having done it "a few times." When I questioned him further about the prognoses of his patients, he couldn't tell me anything because he "usually doesn't follow the patients post surgery." I also feel it necessary to mention that in 2012, there was no colo-rectal specialists anywhere in New England, and not a single colo-rectal doctor in Maine. I wondered who was supposed to help us after the surgery. Not feeling reassured, I contacted Cincinnati Children's hospital (at the time, they had the best colo-rectal center in the nation.) They were willing to see Martin and do the surgery, but I needed to obtain prior authorization to be seen out-of-state from Martin's state issued insurance. All I needed was a letter of medical necessity from Martin's surgeon. He refused. He brushed off my concerns and insisted that he was more than capable, and everything they needed was at Maine Medical Center. No need to send Martin elsewhere. I had begun fundraising efforts on my own, to try and cover the expense of traveling to Ohio. I appealed Mainecare's decision to deny prior authorization, but was told that Martin, being on "welfare healthcare" didn't "deserve any better treatment than any other child in Maine." They ignored my research, denied my pleas, and shut down any chance we had. Defeated, and feeling pressure from the surgeon to operate before Martin got bigger, I reluctantly scheduled the surgery. It was performed February 23rd, 2013. Two months later, once the surgical site on his bottom had healed somewhat, we returned to Maine Medical Center to have his colostomy reversed. A few weeks went by, while we desperately tried to keep up with all the medical care Martin needed. We noticed Martin's bottom had erupted into the worst diaper rash you could imagine (his skin had never been exposed to waste, besides urine.) It was raw, red, and bled. Also, it appeared as though some tissue was exposed on one side. No matter what we did, it would not heal. I frantically searched my Facebook groups (for people affected by VACTERL) for what other parents did. We tried every cream, every powder. We had alarms set on our phones to change his diaper every 45 minutes, day and night. We returned to the surgeon's office almost a dozen times, desperate for help. We asked about the exposed tissue, because it seemed as though the rash kept started there. He kept saying we must not be following his directions or it would've healed already. We were absolutely meticulous and nothing changed. Martin was in agony. After almost a year with no improvements and no idea what to do, my husband reached out to his family in Connecticut and asked if we could come stay with them while we sought out a hopefully better surgeon for Martin. They graciously invited us into their home. We moved in July, 2014. Martin was seen by Dr. Michael Bourque at Connecticut Children's Medical Center. At his first appointment, Dr. Bourque concluded that the exposed tissue by Martin's anus was preventing the area from healing up. He reasoned that a simple "tuck" would fix it.  Once he performed the tuck, the rash disappeared and we have never had an issue since. The team at CCMC did tons of tests and imaging on all functions that could be affected by VACTERL. They followed his hydro-nephrosis. When it came time to attempt potty training, we were told to try traditional methods and "maybe Martin will get it, maybe he won't." Martin seemed to have no trouble peeing on the potty, or being able to tell when he had to go pee. The issue was, he could never feel that he had to poop, and seemed to not be able to tell when he was actively pooping. We were extremely worried. It seemed like he didn't have a lot of sensation, if any. A few months went by, appointments feeling more and more pointless. We were getting no answers, and no recommendations to specialists or bowel management. Feeling like this was the best it was ever going to get, we remained hopeful that Martin might figure it out. We made the decision to move back home to Maine to our house, and my family. We saw no improvement on the "number 2" potty training, and decided to home-school Martin for his kindergarten year. We saw no other recourse, and felt very uncomfortable sending him to school being incontinent. I started giving Martin ex-lax chocolate tabs (by recommendation of his clueless GI doctor) daily to keep him regular and avoid constipation.We came home in August of 2017. A few months later, I noticed a comment in one of my Facebook groups. A user was writing about her child being seen by Dr. Belinda Dickie at Boston Children's. Apparently, Dr. Dickie had started a colo-rectal center at Boston Hospital when she recognized a serious need for it in the area. Of course, this happened a little under a year prior, and we were not aware. Recognizing that this was (FINALLY) the specialist Martin had been needing to see his whole life, I immediately began working on obtaining prior authorization through Martin's insurance to be seen at Boston Children's. Months of paperwork and phone calls later, we were approved to have an initial appointment and imaging done.

This was the appointment that changed our lives. Dr. Dickie explained that Martin has a lot of factors working against our goal of achieving continence. First, a tethered spine is always a bad omen for kids with VACTERL. It can indicate nerve problems in all the functions on the lower half of the body. Second, the shape and muscular structure of Martin's bottom (he has a very flat butt, not much definition.) Third, his sacral ratio measurement. This is a measurement taken of the sacrum. It shows how much of the bottom of your spine is intact. Depending on the size and shape, it can indicate whether a child will ever have the control necessary. Martin's sacrum is right on the cusp of not being quite enough. Taking all those factors into consideration, Martin had a 50%-60% chance of achieving continence. That was BEFORE the surgeon in Maine BOTCHED Martin's Pull-Through procedure.That's right! He placed Martin's anus in the wrong spot. It is up too high. It is actually not connected to any of the nerves or muscles Martin DOES have, down lower, in his butt. So for 3 years my child has been struggling to feel when he literally cannot. For 3 years we have painstakingly tried to help, no to avail. All the surgeon had to do was sign his name on a piece of paper, but instead he reduced MY CHILD's chances of having a normal life to 15%-20%. Dr. Dickie expressed her condolences, and offered to try and fix the surgery. She said it would be the only way to increase his chances back to what they were before. She explained that Martin would have to start a daily enema regimen (which he could be doing for the rest of his life, if we can't figure this out) and eventually down the road he may choose to have a Malone placed if traditional continence wasn't working out. Our world crumbled. We were absolutely livid, so sad and worried for our little boy. We realized all this time has been wasted, and all it's done is make Martin feel like there's something wrong with him. This is the only thing he cannot conquer. He cannot go to school, he cannot have sleepovers or do activities every little kid should be able to take part in. It completely breaks our hearts that he is struggling this way. We were so angry at the surgeons for not helping us seek further guidance from specialists. All they've done is brush Martin's problems under the rug. Had we trusted our instincts that something has been wrong all along, and known what to do or where to go, we would have prevented all this. Our first thoughts were to seek legal action, thinking if we won we could just use the funds to get Martin the care he needs in Boston. We contacted every Medical Malpractice lawyer in the state. Many reviewed Martin's records and case and considered taking it, only to find that the statute of limitations on Martin's botched surgery would be up in February 2019. There was no time to make a case. We came to the realization that we can no longer live in a state where Martin cannot get to the specialists he needs. Mainecare again refused to send Martin to Boston to repair the surgery even though that is the very reason he is in this situation to begin with. We began looking at all the colo-rectal centers in the country (there are about 5.) Dr. Alberto Pena and his team have relocated the best colo-rectal center in the country from Cincinnati Ohio to Aurora Colorado. This seems to be the most accessible place for our family to live, but it's also 2200 miles across the country, and completely foreign to us.  In all these months that have passed since we got the news last August, our family has endured a huge amount of heartache. We are being forced to sell everything we own and leave our home because of ridiculous medical circumstances. My family, my husband's family, and Martin are all heartbroken that we won't be anywhere near each other any more. We realize though, that if we don't do this, we will not have exhausted every single option and tried our very best to give Martin real hope of a "normal" life. The expense of moving our entire lives that far, getting into a new home, and trying to make ends meet while Martin spends weeks in the hospital feels insurmountable. 

Martin is a beautiful, happy, considerate, extremely intelligent little boy. He lights up all of our lives. He has been the very definition of brave and resilient. This one thing is the only thing holding him back from flourishing. He deserves to go to school and have little friends and join in any activity he wants. Children with his condition everywhere are struggling to get the care they need. Please, help make that his reality. Please, even if you cannot donate, share this story with everyone you know. Raise awareness for kids living with unseen conditions and disabilities.This is America, 2019. It is a disgrace that any child should have to endure what my son has been through. We are desperate for help, so as much as I HATE asking for help, here it is. Please send your thoughts, prayers, good vibes Martin's way. It has been and will continue to be a long road, but we know together as a family we can do anything. Our goal is to move in the beginning of May, so we can get his treatment plan started right away.

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Emily Jean Desjardins posted a new update:
25 days ago

Update #1

Hello all!
My husband's flight, hotel accommodations and rental car for Colorado are officially booked. He will be flying out ahead of us on April 3rd. He needs to meet with our realtor to view some properties around the Aurora area and try to find a starter home for us. He will also be interviewing for jobs and meeting with Dr. Pena to make sure he's received all Martin's records and can start a care plan at the hospital. Hopefully this process will take less than 4 weeks. In the meantime, I will be here with Martin trying to pick up as many shifts as possible to try and offset some of the cost of Anthony's travel. As soon as he is able, he will be flying back to Maine. We'll then take all of our stuff out of storage, put it on a truck, and embark! I will keep you all posted on our progress. Please keep sharing and updating your friends and family! If this fundraiser goes any higher, we might actually be able to afford some furniture or a car when we get there, which would make life so much easier. THANK YOU ALL!!!!

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