Services for children and young people in Northamptonshire (aged 0-25) with special educational needs and disabilities.

Downs Syndrome

22 September 2016

We got sent this from Hayley for the SNIX magazine and thought it was a lovely blog to share instead.

Working together for the best possible beginnings - unexpected news

When Down’s syndrome is identified in the hours after a baby is born, it can be a devastating shock for new parents. I know, because just over nine years ago we found ourselves in that position. Full of ignorance and fear, we had no idea what the future held for us. I hope that sharing the support that worked for us will help others create positive outcomes in the early days.

I wish with all my heart that I could go back and relive the early hours, weeks and months of Natalia’s life. To experience those precious, unrepeatable newborn moments afresh, to enjoy our baby simply for who she was with the knowledge I have now. But although I cannot do that, I do hope that some of the following tips and advice will help to allay the fears of new parents.

As we giggle watching Natty perform her latest dance routine complete with twirls and twerks, it seems hard to imagine the dark days, when we feared we weren’t good enough to be her parents, afraid of living a life we hadn’t signed up to, afraid in fact to love her too much. Just in case we lost her.

We are so far from those early preconceptions now that it seems laughable. The images we had of ‘national health haircuts’ and the belief we would never visit the beach again. That Natty would look like every other child with Down’s syndrome. She is of course very much like her family members and her personality is full, unique and displays all the same emotions and you and I.

Natty of course, has been the greatest teacher, only she could melt our hearts and show us that Down’s syndrome was not to be feared. But alongside our trailblazing daughter have been many other important sources of support, those who have brought us to the place of confidence and acceptance we are now in.

The first supporters were in the hospital. Whilst the neo-natal nurses, junior doctors and paediatric consultants stabilised Natty in the neonatal intensive care unit (NICU) we felt as if we were in a cocoon. Our baby wasn’t really ours somehow, we were afraid to touch her, asking permission before we did so.

Two years later, the cardiac team at Bristol Children’s Hospital ’fixed’ her heart, as we now tell her. A routine keyhole procedure to them, it was the most frightening time of our lives.

These are the medical angels, many of their names long forgotten, yet their words of encouragement and the warm smiles will remain in our hearts forever. Despite our baby’s physical wellbeing being their primary concern, they always had time to listen, to talk, to foster the fragile bond between us and the baby we were afraid to lose. One nurse was also a Mum to a young woman with Down’s syndrome who shared with us a family album of snaps. This visual sign that our lives would carry on was particularly useful. Our fears were never brushed aside, no-one judged us as we worked through our shock.

Kangaroo care was also something we were encouraged to do, as skin to skin contact calms and nurtures babies, as well as promoting the milk flow as I expressed for Natty’s naso-gastric tube. These early precious moments will stay with me forever.

For many new Mums, expressing milk for a poorly baby in NICU is understandably one stress too many. For others it gives them a focus at a time when they feel otherwise helpless. My wishes to breastfeed were fully supported although it took time, patience and round the clock efforts, but it gave me something to pour my energies and emotions into and made me feel more connected to her. Tiny gestures made the process of constant expressing easier. A pretty cool box to carry labelled milk to the hospital in and the loan of an industrial double breast pump really made a difference. Words of encouragement too can make all the difference. Being told that your baby won’t be able to breastfeed due to a large tongue or tiredness, or that your milk would dry up due to shock, might have been enough for me to stop trying.

Local feeding support groups are invaluable. Sharing stories with other Mums and getting expert advice from specialist midwives on a weekly basis gave us reassurance and hope. It was with their guidance that we finally found the courage to completely transition from NGT to breast.

Once home alone with our beautiful yet vulnerable new baby we could easily have felt cut adrift. When signposted well, a network of help can make all the difference in those early shaky, sometimes dark days. A local general practitioner (GP) asked to be Natty’s designated doctor. It turns out that he has a grandson with Down’s syndrome. He was the first person to ask to hold our baby, saying how truly beautiful she was and I will never forget his words:

 

These babies are the world's best kept secret."

How right he was. We relied heavily on this trusted professional, asking him weekly to check Natty’s breathing or heart. He never made us feel like time-wasters and carefully listened to our fears, but would tell us honestly and swiftly if our fears were unfounded. He knew us and he knew our baby’s health better than any one. Nothing was ever missed and he valued our daughter as much as any other patient. He saw the unique individual that she is, not a set of medical characteristics.

The next person who featured a lot in our weekly lives was our Health Visitor. She simply understood and pointed us towards other services such as Portage, Makaton courses and helped us fill in DLA forms as well as finding online support groups and charities.

Portage then took over and became the service that gave us the skills to do it alone, to trust our instincts with Natty and become experts through experience. We were able to recognize her different learning styles, organize her medical notes and also find our voice as an advocate for our daughter.

Today, we rely on different types of support. Natty still needs regular medical checks and lots of educational support, but things have slotted into place for us. This is our world, she is a valuable part of it and we wouldn’t change anything about it, or her, for anything.

When I told Natty I was writing this piece for those working with new parents, she said ‘Ah, cute baby. I love you. I love you.’ And with those words for new families everywhere, we wish you well on your journey. It may take some twists and turns, or a route you were not anticipating, but it will be worth it. Enjoy that little person for exactly who they are.

Hayley Goleniowska - Natty's mum

We came across Hayley on the Local Offer  because she has created some materials to buy for new parents "Talking about Down's" and a book called "I Love You Natty" for siblings to read about having a sibling with Down's syndrome. We have them listed on our Reading and Games  pages on the Local Offer.

Down's Syndrome

This is the description on the Local Offer in our glossary:

"A genetic condition that typically causes some level of learning disability and characteristic physical features. It is caused by the presence of an extra copy of chromosome 21 in a baby's cells. Babies born with Down's syndrome are likely to have reduced muscle tone (hypotonia) and a below-average weight and length. Certain physical characteristics are associated with Down's syndrome - not everyone will have all of them, but they might include: a small nose and flat nasal bridge, a small mouth, eyes that slant, a flat back-of-the-head, a bigger space between the first and second toe (sandal gap), broad hands with short fingers, and their palms might have only one crease across it (single transverse palmar crease). Children with Down's syndrome will have some degree of learning disability (and delayed development), but this varies widely between individual children. Complications of Down's syndrome include heart problems, bowel problems, difficulties with hearing and/or vision, and an increased risk of infections."

In Northamptonshire, families with Down's syndrome children also access the Portage support from birth to starting school that Hayley and Natty were able to get in Cornwall. Northamptonshire has parent support groups for families with Down's syndrome including a local Ups and Downs group, Baby Babble for speech development run by the Downs Syndrome group from Northampton, Hunny Pots which is run by Northampton General Hospital at the Child Development Centre for under fives and lots of opportunities for children and young people to explore  in sport, dance, drama.

Please use the Local Offer to find resources and share them with your family and friends.


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