Birth, Our Son, Parenthood, Personal

World Cerebral Palsy Awareness Day

Today is World Cerebral Palsy Awareness Day.

“One in every 500 children will have cerebral palsy. 8,000 babies and infants are diagnosed with the condition each year. In addition, some 1,200 – 1,500 preschool age children are recognized each year to have cerebral palsy.”

Our son has cerebral palsy.

This is the story of how we came to find out, and our journey from ignorance to awareness and understanding. We talked about it with each other and with our parents. But we found it difficult to share the news with others, although we knew we should. I really wanted people to be positive. I didn’t want any negativity surrounding Sebastian or his abilities. And just as we had no idea what CP was originally, we knew that many others wouldn’t either.

When Sebastian was born, his umbilical cord was wrapped around his neck. As he emerged into this world, he was covered in meconium and was a bluish-gray color from not breathing. My mom had been taking pictures because I wanted her to document the birth. As his head emerged, she knew something wasn’t right and stopped immediately and started praying. Sebastian was taken to the resuscitation table in the corner of the room and I remained on the bed, in shock. He was intubated to breathe after the doctors suctioned out the meconium. He did not cry. Sebastian suffered from grade 2 HIE and had neonatal seizures. He stayed in the neonatal intensive care unit for 16 days.

Just before he was allowed to come home, he was given a magnetic resonance imaging (MRI) scan to assess the damage. I accompanied him into a very cold room which featured a large machine with a tube-like hole. He was wrapped in blankets and heavily sedated. I wore my jacket and used earmuffs to drown out the noise of the magnets moving over his body, taking pictures of what was going on inside his brain. Then we waited as the images were sent to the best neurologists in England. The results came back soon after, just before Sebastian was to be discharged from the hospital and while my mom was still in the country. I only remember the words cerebral palsy. We broke down and cried. It was devastating, mostly because we didn’t have a clear idea of what CP was. Images of a child in a wheelchair, unable to eat or function independently entered my mind. Would this be our son? Pushing this possibility to the furthest part of our minds, we told only our parents. I prayed; for healing and health, for a creative miracle.

From the age of four weeks Sebastian was seen by a physical, occupational and speech therapist. We didn’t always get very much accomplished because Sebastian cried a lot and didn’t want to do anything on the floor with the therapists. But they gave us exercises to do at home and we did them daily. It was tough because we didn’t know what we were looking for and because Sebastian didn’t like to be on his stomach on the floor, but we were determined to do anything we could to ensure our son had the best possible future. We didn’t have a diagnosis yet, but it seemed like the therapists knew something they weren’t telling us. Everything was blamed on the insult to his brain at birth, but I was searching for some normalcy in everything, that the reason for his tears was the same as for any other baby.

At about this time we found out we would be relocating to Egypt at the end of the summer. Would we be able to find therapists to work with Sebastian in Cairo? And if so, would they be good enough? I began searching via the internet and contacting online groups in the area to find out what Cairo would have to offer our son in terms of care. We were also put on a waiting list to see a neurologist at Great Ormond Street Hospital (GOSH), a famous children’s hospital in London. We needed to have a specialist explain the brain scans. When we met with the neurologist just two weeks before leaving London, he gave us a definite diagnosis of moderate cerebral palsy. Sebastian was three months old. The doctor didn’t say what Sebastian would and would not be able to do; he said every child with CP is different. We remained positive, but were still heartbroken, leaving the hospital in shock. In the days that followed I swung between bouts of anger, sadness, loss, yet hope. There was, and remains, hope in my heart for my beautiful son.

It is in situations like this that our distance from family and friends feels most pronounced. We chose a couple of close friends to share the news with and I will forever be thankful to A, who shouldered the burden of sharing the information with our other close friends in the area. I say burden because it is very difficult to accept and understand myself what it means to have a child with CP and I couldn’t have handled sharing the news over and over again.

We moved to Egypt when Sebastian was almost 4 months old. He began physical therapy (PT) a month after we relocated at a center twenty minutes walk from our new apartment. He has since started seeing an ortho-motor therapist (speech and language) and we will finally meet with the occupational therapist (OT) next week after being on a waiting list since arriving – there are only four OTs in all of Egypt!

We returned to London and GOSH for a follow up MRI when Sebastian was six months old. Sebastian had to fast for 24 hours before the scan, which was scheduled for eleven in the morning. I was never so thankful for Sebastian’s health as in the four hours we sat in that hospital and watched truly unfortunate children wheeled by en route to innumerable operations. Holding Sebastian while he was put under general anesthetic was one of the hardest things I had to do. Tears streamed down my face as Sebastian went limp in my arms ahead of the MRI. But half an hour later he was awake and feeding, and two weeks later we got the results back. The swelling had receded, his brain was growing. The area which sends messages from the brain down the spine to the rest of the body had healed and was developing at the rate of a ‘normal’ child Sebastian’s age. On top of that, Sebastian had started to smile socially (and for the camera) and make voluntary movements with his body such as rolling, jumping and sitting with support. These were huge developments and the doctor was very impressed. The only remaining damage affected about one third of Sebastian’s basal ganglia, the part of the brain that creates messages for motor function. The doctor diagnosed Sebastian with dystonic cerebral palsy involving all four limbs. I would say it’s mild to moderate.

Dystonic CP is a rare form that affects about 20% of people with CP. Understandably, a lot of the reading I had done up to this point was about more common forms. Still, I try to learn about dystonic CP so that I can better understand my son and what I can do for him. My basic understanding is that it means his (muscle) tone varies from relaxed to tight in his arms and legs and that his tone in his trunk is lower. It also means that there can be abnormal and involuntary movements. Our PT doesn’t see the latter at all and believes it’s too early to make such a diagnosis. I am happy for him to be so positive with Sebastian as he believes there is nothing Sebastian can’t do, it just takes teaching him and time. One thing about CP is that everything is delayed. I have no idea what Sebastian would be like or how long it will before he reaches milestones. Every day I prayed he would smile. And his first smile brought such tears of joy to my eyes. I imagine it will be like this each time he accomplishes something, just like it is for any mother. And he will achieve things, just in his own time.

Since his diagnosis I have read a lot of books; with stories, facts, exercises, advice. I read blogs written by other moms with kids who have CP. I have never stopped praying for Sebastian. It is a miracle that he survived his very traumatic birth and I believe more miracles will ensue.

On keeping silent: As I mentioned before, there are many friends who do not know about Sebastian. You may be one of them reading this now. I hope that you can understand the impossible challenge and mental exhaustion involved in sending people individual emails about our son. Due to our location, this is the method of choice, even though a phone call or a face-to-face conversation is obvious preferable. There are a lot of things I haven’t written about on my blog because we haven’t been ready to ‘go public’ with Sebastian’s diagnosis. But after the second MRI, we actually left the hospital smiling. We left with so much hope for our son who has already amazed us so much.

When I tell people about Sebastian I always feel the need to explain all the amazing things he is doing, like smiling and laughing and jumping. I don’t want people to have the initial image I had when I first heard those words: Cerebral Palsy. And this is why World Cerebral Palsy Awareness day is important. Sebastian’s intelligence has not been compromised. And this is true of so many with CP. But in our ignorance, we often think the worst. I want to be able to write freely of my feelings and now I can. And I want to answer your questions, if I can.

Edited by Alastair Sharp

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12 thoughts on “World Cerebral Palsy Awareness Day”

  1. It’s weird that we do not know each other personally, because at times it just feels like I just have a friend named Kara in Cairo. I value your experiences, words and random moments because you have offered me moments of reflection, laughter and smiles via blog posts, flickr and fb.

    I just wanted to pass on my support to you and your family ~ I can’t imagine all the highs and lows you’ve all been subjected to in this stage in life, however I do know you handle everything with grace and unconditional love.

    Hopefully, it has helped sharing this information with everyone. In a way, you have just accomplished your own milestone.

    Thinking of you!

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  2. Kara, thank you for this courageous, poignant, loving post about Sebastian! It will surely be the kind of thing that he will read and re-read as an adult, amazed by the outpouring of love that his parents have for him. It was a gift to read through this email then be greeted by the beautiful photo of Sebastian below it…he’s getting so beautifully fat! What a gorgeous child you have, and I’m sure his spirit is equally stunning. You’re such a good mama…know that you and Sebastian and Ali are always in my thoughts and prayers. Thanks for making us more aware of what CP is, in all it’s diversity. Love to you!

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  3. Angel……….you are a very strong woman and I am so proud of you and Ali for you have met the challenge of Sebastians birth with Love and Gods grace.

    In 1 Cor 12:31, it says- But earnestly desire and zealously cultivate the greatest and best gifts and graces (the higher gifts and the choicest graces). And yet I will show you a still more excellent way (one that is better by far and the highest of them all – LOVE). amp.

    God’s destiny for Sebastian is “great” and I would guess our Father in heaven is smiling for the way in which you and Ali have protected and cared for “his child” for such a time as this……………

    I know it was a difficult and sensitive post for you to sit down and put into the thoughtful words that you did, I am thankful for Ali’s support in this.

    I love you and miss you………..hugs, mom

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  4. Kara-
    Thanks for sharing the journey of Sebastian with all of us. I truly believe the sky is the limit for your family. I am proud of the woman you are and the mother you have chosen to be.
    Love you girl!
    bets

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  5. Kara and Ali, You’ve taken us through your story of fear, the unknown, challenge, anger, and a string of other emotions and what comes out of it is still a beautiful family and a miraculous story about a beautiful boy. Sebastian is so blessed to have parents with such love, patience, hope and will to educate and know about what is best and what to do next. Not only are you educating yourselves to help Sebastian specifically, you’re here educating others to help everyone get a better understanding of CP. I admire your drive, your process of coping with this and your continued effort to help Sebastian overcome obstacles. He’s already come so far and watching him grow and develop is going to be so amazing, obviously for you but for us, too. We love you three so tremendously and appreciate your honesty and bravery to share this story. Love, Divozzos

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  6. Thank you so much for sharing this. And you are right – I really didnt know much about CP before at all. It is wonderful to read that Seb is doing so well and you obviously have amazing strength as a mother – something I am sure you are passing on to him. He is a little miracle!

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  7. Thank you for sharing your story, Kara. I know you wrote this a couple of years ago, but I have just stumbled across it now. You are brave to have written down your experience.
    I have a 5-month-old daughter who, like Sebastian, had an injury to her basal ganglia. Here in New Zealand they won’t diagnose her until she is about 18 months old. But the likely diagnosis is athetoid/dyskinetic cerebral palsy. I am learning to take each day as it comes. It is hard. Blogs like yours help.
    Thank you again. Sebastian is beautiful 🙂
    Sara

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  8. Thank You for sharing you and your son’s story. My son is 17 months old and was diagnosed at the age of 7 months and that took me going to 3 different hospitals the original one wouldn’t even tell us he had HIE, and yet we are still struggling to find a doctor that will help us at all with this, I am so happy your son and is doing so well and making great progress I understand the joy of watching him smile socially and knowing what a big deal that is! Know prayers are with you and your family.
    Lauren

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