How it feels to raise a child with severe disabilities. Chris Butcher.

On behalf of Chris Butcher
My son Carsen Stephen Patrick Butcher was born on November/11/2011.

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During pregnancy everything was going great until we had an ultrasound and we could see clear deformities were evident. When we mentioned this to the doctor and midwives both said that everything was fine and not to worry. They said, “you’re too young to have a special needs child”. As if your age can play a role in preventing disabilities.

We requested more ultrasounds and were told that we would have to pay. At the time we could not afford what it was going to cost to travel to Port Perry to get the ultrasound we wanted so we decided to wait until he was born and hope for the best.
When the big day came we went to the hospital in a cab, upon arrival we were admitted to the maternity ward where we met nurses and doctors. At this point we just waited in a room for the midwives to arrive. When they got there they helped Carsen’s mom through her contractions and provided support. The midwives were a great idea, however, it seemed like the nurses and midwives weren’t really sure who was doing what. It felt like they were stepping on each other’s feet. There was no real plan set in place. Hectic is the only word I can find to describe it.
When the time came to deliver Carsen, everything became an emergency and a big rush. They had to break his mom’s water and immediately rushed her for an emergency caesarean section. I was left in the room with very little information on what was going on with my son.

When I finally was informed I was told they took her for the emergency cesarean section because Carsen had swallowed meconium and amniotic fluid due to fetal distress causing them to need to get him out immediately to prevent aspiration, as I waited in the room for around an hour, A doctor walked past the room I was in with a baby in his arms he stopped right outside and stated to a nurse that who was behind him “this baby has breathing problems” and continued down the hall.

A nurse finally came in and told me we had a baby boy but he wasn’t too healthy. She explained that it looked like he has deformities with his hands and feet also that he was having a hard time breathing so they were going to use a endotracheal tube to suction meconium from below the vocal cords, where I was told I would be able to look in on him through a glass window. That was the first time I saw my son.
It was hard to see him like that. He was in an incubator with a number of tubes in his mouth and so many wires attached to him for heart, pulse, and brain monitoring, I was told I could not hold him, His mom was still in recovery, That Carsen was being sent to sick kids within the hour and that we would need to find a way there.

I called my mentor Nicole and told her that Carsen was going to Sick Kids and we needed to find a way to be with him and she came almost instantly to provide support and help out with transportation.

When we got to Toronto and arrived at the hospital we had to talk to security and were told Carsen was on the 7th floor in room 7B with 5 other children. I was finally able to hold him for the first time. He was however still attached to many monitors and this made it very difficult to maneuver him; so holding him wasn’t the easiest thing to do.

Over the next month we met so many doctors. Almost every day there was someone new with more confusing information. We were told early on that he had numerous problems from neurological to physical disabilities and were informed that there were many tests and x-rays that needed to be done, and that the brain disability he has is very rare. All his tests would need to be sent to the United States for concrete answers and results would be timely.

Carsen’s metabolic doctor sat me down and tried to explain a very confusing diagnosis with me, he told me that the brain disability was called “Bi-lateral Polymicrogyria” (PMG) and that it affects the mutation of cells in your genes. Polymicrogyria literally translates to many small ridges in the brain, the ridges and folds on the brain were too small and too close together, still very confused the Doctor explained it in a way that made a lot of sense to me. He said that if you think of chromosomes as 46 bookshelves and all of your millions of genes as the books that are on those shelves and defective genes are like books with pages ripped out. Everybody in the world has a few defective genes (a book with ripped pages) but naturally you will have a copy of that book (gene) so you won’t use the book with pages ripped out, instead you would use the copy. But in Carsen’s situation affecting multiple genes both his copies are defective causing his brain to need to use those genes. He basically doesn’t have a copy with all the pages there. I would give the names of these genes but there are so many affected and they have very large names.
Over that month at Sick Kids the doctors were very supportive of us and helped with a lot of support mentally and physically, giving us various names of doctors and programs that may help. Carsens symptoms are Polymicrogyria, Microcephaly, a hernia on his abdomen, underdeveloped optic nerves, Bilateral finger and wrist contractures hip dysplasia, trachealmalysia, Hypertonia, rocker bottom foot (like club foot), hypoplasia, and 2 small holes in his heart. These are all symptoms of an unknown diagnosis, however the doctors are testing for Cerebro-opticus-facial-skeleton syndrome (COFS), tests can only be done in Europe and this is a fatal diagnosis and children who have this are usually diagnosed at birth and don’t usually live past the age of 5. Some of these symptoms have not yet been fixed, may not be able to be fixed, or will hopefully fix or improve in time. Some things that are common with children with COFS are the inability to control muscles, involuntary eye movements, and mental retardation. Genetics doctors believe that he may be taking seizures so he will be seeing a neurologist to have an EEG (Electroencephalogram). He has already had surgery and may still yet need multiple more surgeries.

For the first 6 to 8 months he had a cast on his right leg and one on the left for the last of the 8 months. He was in a wheaton-pavlic harness that would keep his legs bent by pulling his knees towards his chest holding his hips in their socket, now he has his casts off and is in an AFO arm and foot orthotic that stays on 24 hours a day. However, I think he might need to be in casts again.

Carsen is now living at home with me and has multiple community resources that provide support for Carsen and his disability. Some of the supports he has are 5 counties physiotherapy, Canadian National Institution for the Blind, Community Living, Genetics team, Metabolic Specialist, Ophthalmology, Orthopedics, Neurology and a Paediatrician for regular check-ups.
Having a special needs child has really opened my eyes to the reality of life. I always thought that I was ready to be a father but nobody can be ready for this experience. There’s no good way to prepare for it other than to just face it head on and do the best you can for your child however short the doctors say your child’s life may be. You just keep on trying and loving them with every piece of your heart. They’re just like any other baby just with more needs.

Some of the main challenges of raising Carsen especially on my own is his shortened life expectancy. I’m always terrified that it’s going to come too soon. I’m not ready to lose him. Emotionally I would break if I lost him; he is now 14 months old and is still like a newborn infant. He cannot hold his head up, sit, walk, roll over or do anything a normal baby at his age does. He mostly just sits and stares. I interact with him as much as possible and we introduce him to new things like feelings and sound and have gained little progress, but it doesn’t matter how little the progress, it is improvement and that’s all that counts. Unconditional love and massive amounts of patience have proved to be some of the greatest needs in our situation.
A few other smaller problems that do play a big role in making it hard to care for a special needs child are the fact that he can’t do anything on his own. Making bathing feeding and carrying him everywhere he needs to go very difficult. He is a Daddies boy so every time I leave him he gets very fussy, I get told by everybody that he has attachment issues with me making babysitters hard to find even though I don’t enjoy leaving him with babysitters. I feel that I have problems trusting people with him, that’s not just babysitters but professionals, family and friends too, but I am learning to let go, not too much though because there has to be one adult in his life that, no matter what will never give up on him.
Having a baby with special needs has changed my life completely. In both small and large ways I feel like a better person for doing the things I have done to support Carsen. As scary as it is to go through it has made me stronger as a person and I have learned many things. I would not know what it is like to have a normal child. I feel like it’s wrong to say that, if I had the ability to go back in time and change his medical problems I wouldn’t because I love my son the way he is, but I would change his disability so he could be a normal baby, and have a normal life.

Yet in my eyes he is a normal baby, and he is my world and I will never let him go. Being his father makes me feel like a hero.

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About Daddys with Angels.

We began as a group for grieving fathers and men in families, but other family members asked to join us. We now also have a group for Families with Angels dads and other male family members and siblings under 18. We have experienced and live with the harsh pain of loss and we hope we can bring other comfort with what we do, To find us please search for us on face book or www.daddyswithangels.org/. Hugs to you all and floaty kisses to all your angels. We retain the name Daddys With Angels.
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