I remember it well, Monday evening in February 1997 at 10:30 pm, when I went into hospital for the delivery of my second child. After 4 hours of being in labour, at 2:30 am the following morning I gave birth to Jaylan. Waiting to hear his first cry was unsettling beyond belief, it was as if the world had stood still. Watching the nurses tapping his little feet to get his blood circulating, we were all anxiously waiting for his cry. But before I realised, Jaylan was wrapped up in a blanket and taken away, still no sound from him. This was not how I had imagined the second birth of my child to play out.
I was taken to another ward to rest and within the hour the nurse told me they had to take my new-born into ICU as he was having difficulty breathing on his own. After my husband returned to the hospital the next morning, we were finally both taken to see him.
All I could see was my tiny helpless son threaded with tubes and his innocent body struggling for every breath. At that moment, my husband and I realised our world had been turned upside down, because we knew something was not right. Jaylan lay caged in an incubator with his face and belly inflamed with fluids. My boy was fighting for his life. The doctor would not tell us anything when questioned and said they were waiting for blood test results to come back to find out what was wrong with him. With no answers and a growing list of questions, my husband and I anxiously waited. This was the longest waiting game. We never agreed to this!
Later that day, after what felt like hours later, the doctor confirmed our son had Down’s Syndrome.
Can an Amniocentesis Test be wrong?
During these initial moments I could not understand how the Amniocentesis test I had taken during my pregnancy had shown to be negative. I had put all my trust in this test and had assumed that given the development of medical procedures a false-negative test was a rarity in current times. I had so many questions.
The accuracy of amniocentesis is about 99.4%.
Amniocentesis may occasionally be unsuccessful due to technical problems, such as being unable to collect an adequate amount of amniotic fluid or failure of the collected cells to grow when cultured.
My little girl, only 3 years old at that time was excitedly expecting to greet her new baby brother and take him back home. Trying to hide my emotions from my little girl was an extra challenge I never envisaged. There were so many thoughts rushing through my mind. I was not physically or mentally prepared for this. I had so many questions:
· What were our lives going to be like?
· What challenges would we face as parents?
· What does it mean for us as a family?
· How will the future shape up to be for both our son and daughter?
We were given a few bits of information from the hospital about Down syndrome. Over 20 years ago, there was little awareness of Down’s syndrome, nor did we have Google at our fingertips. We spent the first week researching this genetic condition and the implications it would have for Jaylan and us, as a family.
One week after entering the world, we hit further complications. Jaylan’s bodily fluid was increasing, putting pressure on his organs, which meant he had to be transferred to Great Ormond Street Hospital to their special ICU unit. Jaylan spent the next 3 weeks proving his life was worth fighting for. Every day my husband and I travelled to the City hoping for some good news.
A mother’s unconditional love for their child was trapped inside me. During this distressing time, I was not able to hold my baby, feed him or do anything for him. Our trust and our baby were left in the hands of the medical profession. All the time we spent journeying to and from the hospital, meant time less spent with our young daughter. I was fortunate to have been living with my husbands’ parents, who were able to care for her in our absence.
Our advice to the parents of today’s Down’s babies is simple - be strong and trust your instincts. No question is too small nor too silly. Ask, ask and ask some more! Down’s syndrome is not to be feared but welcomed. I leave you with something my daughter said,
“who knew having an extra chromosome would give Jaylan the ability to bring out the best in people around him”.
I will continue to talk to you about the challenges we faced with Jaylan and how we coped.
https://www.downs-syndrome.org.uk/ - each country will have their own organisations that provide help and information.
If you have any questions and would like more information, please send your name and contact details to firstname.lastname@example.org and I will respond directly to you.