Guest written by Sharon Kloppers from JUST ENGAGE
This is the first post in a series on Down’s Syndrome. Most of us as women can recall a scan at some point during our pregnancy where a doctor or specialist was looking for signs or markers of Down’s Syndrome but what does prenatal screening actually involve, what causes Down’s Syndrome and what do parents do who are confronted with a positive diagnosis?
One of the aims of our Online Antenatal Class is to prepare expecting parents for eventualities they might not anticipate and to help them face those challenges informed and connected to appropriate support.
Did you know these facts about Down’s Syndrome?
(provided by Dept of Health WC Govt Website)
The cause of Down’s Syndrome is not related to age, race, religion or socio-economic situations.
It is estimated that one in 1 000 babies born in developed countries and 1 in 650 babies born in developing countries are affected by Down’s Syndrome.
80% of children affected by Down’s Syndrome are born from mothers under the age of 35, although women over the age of 35 are at a higher risk of having a child with Down Syndrome.
Children with Down’s Syndrome can be included in normal schools with regular academic procedures.
Although Down’s Syndrome cannot be cured, people with this condition benefit from loving homes, appropriate medical care, early intervention, educational and vocational services.
Due to advanced medical care, the majority of people born with Down’s Syndrome have a life expectancy of approximately 55 years.
People with Down’s Syndrome have mild to moderate mental impairment.
How is Down’s Syndrome diagnosed?
Detecting Down’s Syndrome in a foetus is a two-step process: firstly, a screening for risk and then a diagnostic test to determine if the detection truly exists. There are a number of ways to identify high risk pregnancies. This is usually done by measuring the mother’s blood levels of certain proteins and hormones, and the use of ultrasound to scan nuchal translucency – the thickness of a layer of fluid that forms near the neck of a developing foetus. Too much liquid there is often a sign of Down’s Syndrome.
Over the next few weeks I want to share with you more than just information about the condition and its implications. I want to share stories from mothers and from the professionals that work in this area. I want to share the incredibly valuable resources that these families have recommended so that expecting parents who find themselves faced with a similar challenge can access support and community in a meaningful way. I have been deeply moved by these stories and people and I’m sure you will be too.
This first story is by Sam from KZN North Coast. Sam and I were at school together in Durban between 1993 and 1997! I have watched this story from a distance through the news feeds of Facebook and so when I decided to put this series together, she was an obvious person to ask for her story. This is Sam and Bruce and the story of their “Eva bug”!
Describe the process of finding out the Down’s Syndrome diagnosis and how you dealt with it.
We had had a few soft markers at a previous scan – a thick nuchal fold and iffy blood test results – and were referred to a foetal specialist. Then on the 7th March 2012 we received our amniocentesis results confirming Down’s Syndrome. These results also confirmed we were having a little girl.
I had desperately wanted a little girl.
I was devastated.
I didn’t cry.
I spoke to very few people.
We received limited counsel from a few close friends. We had a decision to make – whether to terminate our baby girl or not. I said no one should be asked to make that decision, that it was playing God. How could anyone make a decision to kill their baby girl or let her live?
We considered termination.
I couldn’t sleep, couldn’t eat, couldn’t even pray. I had heart palpitations and I was nauseous for the first time in my pregnancy. My husband was worried about my mental health. It was that bad. I guess I went into survival mode. I look back on this time and it’s very blurry. Shock and trauma will do that, I guess.
Then came the day.
I woke up and said to my husband; ‘I can’t do it’. ‘I can’t abort our baby girl.’
We cried. Hard. Tasting the reality. We clung to each other. Then he left to meet up with some friends. In my heart the decision was made, but I knew I needed him to say he was with me. That we’d raise our baby girl together. That he had my back. And hers.
Oh the tears of joy and utter relief that streamed down my cheeks when I received this sms a while later :
Let’s do this together. We will be okay. I love you!
He phoned a second later and we spoke. I have never loved him more than in that moment. I love that he smsed me first. I now have a ‘hard copy’ of that moment. I have also never felt peace like that before in all my (then) 32 years of living. You know you hear about that peace that ‘surpasses all understanding’? Well, it was that kinda peace. (Philippians 4 vs 7:And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.)
This could have broken us. But it didn’t. Instead we have become stronger, closer, we’re on the same team, and I feel so loved and looked after by this incredible man. I’m proud of him. I’m proud to call him my husband and I knew then he would be an amazing dad come August.
With the decision made. I knew it was right. The peace settled around me. I could once again eat, sleep and pray (albeit limited words). Heart palpitations and nausea gone. Ahhh peace…And anticipation….I started to get excited again…
Did her diagnosis affect your expectations of the birth and what was it like to meet Eva-Mae for the first time?
On the 8 August 2012 I headed out to my gynae appointment to see how things were progressing – I was 38 weeks pregnant. My gynaecologist, Dr Candice Roberts, checked everything out and let me know that I was running out of amniotic fluid, but she was still confident I’d be able to have a natural birth. She did an internal examination, said I was 2cm dilated and told me she’d probably see me that weekend to deliver my baby (otherwise she’d have to induce me on Monday). She had an incredibly cheeky grin on her face…later that night I’d find out why…
At 10.30pm that night my waters broke. I let my husband know, jumped in the shower, got dressed, sent a quick email and then the contractions started. I was really keen to hang around at home for as long as possible so in between contractions I bossed my husband around telling him what needed to get done. At 1am I decided I’d try lying down for a contraction and do the relaxing breathing I’d learnt at our antenatal class. That was it – the pain was too much! I yelled at my beloved husband “One – we are going to the hospital RIGHT NOW and two – I WANT AN EPIDURAL!)” By the time we arrived at the hospital I had to be wheeled in by the security guard.
On arrival, the nurses informed me that I was 3cm dilated and it would take the anesthetist and my gynaecologist half an hour to get there. I started to panic a little and wanted my husband who was downstairs filling out paper work. He finally arrived and I went off at him for taking so long – poor man! The contractions became fast and furious, my gynae arrived followed by the anesthetist (who I nearly kissed…until he told me it was too late for an epidural). They both started arguing with the nurses as I was 8cm dilated and why hadn’t they called them earlier?…in their defense I went from 3 to 8cm in 45mins…So by this stage I was literally screaming with everything in me trying to keep this baby in until they told me I could push. The anesthetist gave me something for the pain (it did nothing), I sucked on the gas they gave me like my life depended on it, I dug my nails into my husbands hand as though this was all his fault, I gave death stares to the anesthetist because I couldn’t have my epidural and my beautiful, calm gynae spoke to me in a soft kind voice telling me to stop screaming while my husband forced the gas mask further onto my face to drown out my noise…And. Then. Finally. I was allowed to push! And I did. And it was quick and at 2.24am on 9 August 2012 (Women’s Day) a slimy pink bundle was delivered by husband and placed on my tummy.
Instant relief. Instant love. Oh how she screamed! And I loved the sound of it.
There was a little part of me that wondered and hoped that she wouldn’t have Down’s syndrome and that the doctors had all been wrong, but as soon as I saw my baby girl I knew. They had been right. And I wasn’t shocked – she was what I was expecting…our Eva-Mae had arrived! I got to cut the umbilical cord and hold her closer and they let me just stare at this crying mess of bright pink baby in total awe. What a moment! What a beautiful, beautiful moment.
My gynaecologist and all the nursing staff said she didn’t even look like she had Down’s syndrome. I think they were just being polite. But it didn’t matter. To me? She was perfection.
Our hospital stay passed in a blur of family, friends, gifts and spoils, learning to breast feed and very little sleep with the excitement of it all.
Everyone was so eager to welcome the newest and cutest member of our family and the hospital staff were wonderful and lenient and let everyone pile into our room arms outstretched to get a piece of our beautiful little bug.
And there were tears. Lots of tears.
But…
There were also plenty of smiles. She was beautiful. She was perfect. She was ours.
Did Eva-Mae have any Down’s Syndrome-related medical or physical issues?
Eva lived with heart failure for the first 10 months of her life. She drank and ate so well, but struggled to gain weight as her heart condition caused her to burn so many calories. She caught any germ that came her way and it always went straight to her chest. For a long time we couldn’t go anywhere without her nebuliser and three times she was rushed to hospital barely breathing. Through it all she remained an absolute delight, fighting through and always remaining happy.
We always knew that she would be behind her peers, but her heart set her back even more. At 10 months old she finally reached the goal weight of 6kgs and the heart surgeon agreed to operate. We flew to Cape Town and were blessed with the incredible Dr Susan Vosloo who trained under Dr Chris Barnard (and Dr. LR Horak as an awesome anaesthetist) The operation was terrifying, but extremely successful.
Eva turned a huge corner after that and has not looked back since! In February 2015 we had a check up with the cardiologist and he said Eva is in perfect health and we would never have to worry about her heart again!
At 3 years old she can sit, crawl, climb, is walking short distances and even says a few words and knows a few Makaton signs! She is incredibly entertaining, loves her own reflection and has the best belly laugh! She has no discrimination against anyone and often tries to dive into strangers’ arms for a hug. She’s big on hugs! And kisses and high fives and fist bumps…and food! Oh, and she looooooves music and is really good at head banging!
Eva-Mae is now 3 years old. What does life look like now?
Looking back to when I was just 15 weeks pregnant with our first child and we were told she would have Down’s Syndrome. We were terrified of the unknown, we were encouraged to have an abortion, but we made the best decision of our lives to keep her. Our perfect little bundle of joy, Eva-Mae, is now 3 years old!! She has brought nothing but happiness to our lives, everyone she meets falls in love with her and I wouldn’t change a thing!
Bloom Special Needs School has been the best thing that has ever happened to us all. She is thriving beyond our wildest dreams. Daily she surprises us with what she’s learning and retaining. I’m so so so very grateful to the phenomenal teachers, assistants and therapists that truly love her, challenge her and persevere each day to make sure she has everything she needs to be the best she can be. In the eight short months she has been there she has developed so many new skills it’s hard to keep track. We are so grateful for early intervention and we’ve seen the results and, just as important, the love that flows out of this school. It’s next level amazing and I still can’t believe it’s on our doorstep!
Sam has recommended:
Dr. Candice Roberts Gynaecologist/Obstetrician Ballito KZN Alberlito Hospital 032 946 6973
Dr. Susan Vosloo Cardiothoracic Surgeon Christiaan Barnard Memorial Hospital Cape Town
Dr. LR Horak Anaesthetist Christiaan Barnard Memorial Hospital Cape Town 021 4233698
Bloom Special Needs School Visit their Facebook page by clicking on the link or email bloomschoolsa@gmail.com
Personal stories like these are incredibly brave to share so log in and leave this beautiful family an encouraging comment. Please share this post with pregnant friends and new parents. If you have a story you’d like included in this blog series, e-mail admin@justengage.co.za
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