Parent’s Perspective – Diagnosis

I am by no means an expert. I am a parent, who has learnt without a manual. This opportunity to share my stories and experience for the VICTA Parent Portal, to be able to represent a parent’s voice is, I hope, an enjoyable read for you. I’ve pondered over the last week where to begin. Like every good story it must be at the beginning. So with that in mind I will begin just there – Samantha’s Diagnosis.

The beginning

Our daughter Samantha was an unexpected arrival. After having 4 sons all with different attributes of autism, speech, language and communication disorders, our family was complete. I suppose we did wonder if she would follow the family history and have autism. But we hoped for the best and prepared for the worst, as they say.

At birth she passed her hearing test ✔️ Prior to birth, we’d had an amniocentesis screening so we were sure there wasn’t anything to worry about. Recovering from the planned C section, I woke to a doctor examining our baby, as the nursing team had raised concerns that she had a look of Down’s syndrome. This was something I had already mentioned to my mother. She was examined and given a clean bill of health. All the paediatrician said was that she had hyper mobility and to make sure she became a gymnast, dancer or athlete. We left the hospital feeling positive that we had escaped with a healthy baby and had worried for nothing. She would be different from our boys.

Two things stand out for me around the time of her birth. Our youngest son was being highlighted for autism and language disorders. We were involved in a project called Hannan, as part of the process your child is filmed. I could never put my finger on what was missing with our son Jordan’s development, I just knew something was different. On watching the film it was very evident that he had no eye contact at all. In understanding the detachment no eye contact brings, I felt it was so important to bring my face close to Samantha, speaking to her and being the full focus of her attention, demanding her eye contact. Little did I know how important this would become.

Around a year old, her development was beginning to show concerns, mainly her hearing. Don’t be led into a false sense of security that a pass result at birth means your child won’t have a hearing problem. She continued to fail hearing tests, and our concerns grew. She was also the clumsiest child ever, her paediatrician even considered Dyspraxia. Today, she is a double hearing add wearer who still suffers from glue ear and frequent ear infections.

Diagnosis

At the same time as her hearing investigations, around 18 months, she had her first eye test. Asked if I had any concerns, I said yes, too many to mention but she trips and falls and bumps into things continually. I couldn’t have predicted how the results would impact our lives. In all his years of experience the optician had never had such poor results in a child so young. That afternoon our journey began…

Hospital appointments, tests, screening, visual function tests, you name it, she had it..

Samantha was given the diagnosis “Cerebral Vision Impairment”. OMG how, why, struggling to understand. The tone of questions came as a shock. It’s a condition that primarily affects children who have been exposed to drugs and alcohol during pregnancy. In truth, brain damage before birth!!!

Looking to blame, my pregnancy history was questioned. For goodness sake, I worked in social care, worked with children and families who’s life habits had resulted in disabled children. I felt the blame, the shame of being accused.

Rewind

I have to rewind back to the early stages of our pregnancy. Due to health conditions, an Amniocentesis screening was performed at about 14 weeks.  You are made aware of the 1% risk to the pregnancy. 4 weeks later we received the results and there were no chromosome defects. I asked to know the baby’s sex – a girl! We were shocked as we had expected another boy.

At 20 weeks we had our routine scan. We knew instantly there was a problem by the reactions of the doctors. We were taken to another room to be given the heartbreaking news that our pregnancy was the 1% where the hole hadn’t sealed. It had continued to leak amniotic fluid, leaving virtually no fluid around our baby and the pregnancy would go on to miscarry. In shock we were sent home to wait it out.

My thoughts at that time were that our local neo-natal unit see babies as viable from 23 weeks and 4 days. That was my mission – rest, pray and get us there. At 21 weeks that seemed un-achievable as the fluid continued to leak. A very wise person advised me to continue to hydrate my body. I drank water for Scotland.

At a follow up scan a week later we were shocked to discover the limited volume had increased a little. At 26 weeks, premature labour was stopped and Samantha was eventually born at 36 weeks. Each week had brought new risks and challenges.

By this time the damage had already been done. The doctors believe an infection in the womb had caused the damage to her brain and visual receptors and pathways, and possibly her ears too.

So her CVI wasn’t due to drugs etc, but she had suffered trauma in utero.

Advice

One of the best pieces of advice we were ever given was from a visiting Social Worker from RNIB. And this advice is why I am writing this very long winded story (sorry) .

Samantha was about 4. The social worker asked me to imagine she is 18, at home alone and needs a pint of milk – how does she get it??? I replied, I would hope she is able to go to the shops and buy it…  His reply was (best advice I ever heard):

Well to achieve that you must remove the bubble wrap you have her wrapped in and let her explore her environment. Let her fall, pick herself back up, let her bump and learn her environment around her. So we did just that. Her father was a dancer, and I had watched them daily dancing about the coffee table, my heart in my mouth, crying out to be careful. She went to ballet and dance class from 2.5 years. She ran everywhere, she bounced on her trampoline every day throughout the year in her PJs, in the dark, in the snow and rain. We took her everywhere, travelled to far and wonderful places, gave her every opportunity a typically developing child would have. Her visual and hearing impairment didn’t impact on her ability to have fun.

This became so much more important as school was a lonely, isolated place. She was the child who didn’t get the party invites or the sleepovers (no parent wanted the risk of her falling down their stairs). Her brothers and us as her parents became her friends. We tried to make up for the missed friendships. We understood better than any professional that with a little bit of thought and adaptation she shouldn’t be excluded from anything. Unfortunately, that was a can of worms. I’ll explain in another blog ?..

Parent’s perspective

I found myself isolated and alone. Having disabled children also has an effect on the parents. I had no circle of friends, most of my friendships hadn’t survived our journey. My husband and I seemed alone. Don’t get me wrong, my parents were a god send and accepted our children’s challenges totally.

One night, when Samantha was about 18 months old, we were up to our arms in diagnosis, bewildered and desperate.

I was desperately searching on the internet for support when I stumbled across a playgroup on our council’s website. I called the next day and couldn’t believe I knew the person on the end of the phone from the nursery. She invited me to come and see this little project that could offer support 2 hours twice a week, for about 8 children and their parent/carer. This was the place I hoped for and dreamed of. A room full of people who, like me, had a very different child raising experience. A room full of acceptance and friendship. It made the dark days a little brighter having someone who understood and listened.

People try to understand but unless you have walked in our shoes it is not possible…

I’d like to leave you with a poem I heard many years ago, but it’s a very simple tool to try and explain our journeys.

“Welcome to Holland”

When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport.

Only when you land, the stewardess says, ‘WELCOME TO HOLLAND.”

You look at one another in disbelief and shock, saying, “HOLLAND? WHAT ARE YOU TALKING ABOUT? I SIGNED UP FOR ITALY.”

But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay.

“BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!” you say. ‘I DON’T WANT TO STAY!”

But stay you do. You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed. The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned. It’s slower paced than Italy, less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland has Rembrandts.

But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.”

The pain of that will never go away. You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.

Resources

Find out more about CVI on the CVI Society’s website

Read our Parent Blogs in our Stories Section