Down Syndrome: The diagnosis, the aftermath and a thank you to Exeter Hospital
I'll never forget lying on that little bed, tummy exposed, looking at shapes on a TV scene that even at 12 weeks old were clearly the shapes of a little baby. A person in the making. A human being that I was growing and already beginning to fall in love with. Nothing prepares you for the feeling of doing that positive pregnancy test after months of trying and nothing prepares you for the moment the sonographer explains that they think there's a chance your baby has Down Syndrome.
At 22 years old and pregnant with our first baby this news hit me and my husband like a sledgehammer and marked the beginning of a week that left me physically and emotionally feeling like I'd been in a semi serious road traffic accident.
After my blood tests revealed a 1-10 chance we waited the 3 long days for the results of the CVS test to come back. I can recall waking on results day and lying in my bed and saying to myself "everything is going to be fine", I now realise I was of course right, but it wasn't going to be in the way I was expecting. The phone rang and as my husband answered I knew instantly it was the hospital because I heard the nerves in his voice. I studied his face for clues of what was being said in his ear. Not wanting to prolong my agony he continued to listen to the nurse while simply mouthing "Down Syndrome" to me.
I remember how I felt, but I don't know the words to use to put it to paper. I do remember using the drive to and from work each day to cry. Completely alone, and with no brave face needed I used this time to grieve for the future I felt had been ripped from me while sobbing with guilt for feeling this way about the baby girl who still grow inside me. On our sideboard sat a wedding photo. I would stare at the couple in the picture. It was me and my husband but it didn't feel like us anymore. I longed to go back to being them again. Care free with all our dreams and plans, I longed for it with an aching heart that felt like it physically hurt. To be happy and care free like we were on that day. I knew God was there, I knew his love was pure and strong but I couldn't feel it through the pain of the unknown and his voice felt like a whisper I couldn't hear over the audible grief that thumped in my ears muffling the sounds of the people and lives around me.
I continued to feel this way over the following months. Then on one of our scans it became clear our little girl had a hole in her heart. At 21 weeks pregnant this was the turning point for me, it was the point when I stopped thinking about myself and my feelings, my life and my dreams and focused my attention back to where it should have been all along. On my baby girl. It was at this point that that selfless, unconditionally love started to really kick in. At that moment the amount of chromosomes she had were finally put in to prospective. I felt the fog lift and the world came back in to focus.
By the time she was born we were completely in love with our little girl and when I saw her face all my wounds were completely healed. She was, is and always will be absolutely perfect.
Why am I telling you this? Because during this time in our lives it was you, the doctors and nurses at Exeter hospital, that had the biggest influence on us, it was you we were looking to for guidance, for information and for support. You were the people we went to who didn't hold an emotional stake in our lives.
The pain we carried in those early months were like raw open wounds. We were the most vulnerable we have ever been and the treatment we received from you would have a lasting effect on us.
With the publicity the new screening test is getting I'm reading one story after another of the awful, sad and sometimes unbelievable treatment woman are receiving from their hospitals. Mothers being told their babies weren't worth fighting for, that these babies lives were worth less and that continuing to love their baby was borderline irresponsible. Mothers taken at their most vulnerable and gentle and subtly coerced in to decisions that can never be undone.
But for all the hospitals that struggle to learn how to support these couples and get it so dangerously wrong some get it right. And with us, you, Exeter Hospital, got it right. And we thank you for it.
After the diagnosis we were offered our options but when we made our decision there was never judgement or opinions. Instead of being treated like our baby was less important we were treated like VIP's. It was clear to us that our babies health and wellbeing were important to you. Our ultrasounds (and there were many) became enjoyable and relaxed as with each scan and with your help we got to know and understand our baby girl a little more.
Would you have continued with the pregnancy if it was you? Do you have someone with Down Syndrome in your personal life? I have no idea.....and that's just the way it should be.
Your opinion wasn't needed, only your care, and you gave us that in endless amounts.
This thank you letter is 7 years late but in light of recent headlines and with World Down Syndrome Day upon us it is still worth writing and so to our altersound doctor, paediatrician, and nurses (whos names I have removed here to protect them)
Thank you for treating us like parents and not a case study
Thank you for treating our little baby the same as all the other babies on the ward
Thank you for looking at her and seeing Maddi and not a list of symptoms
Thank you for your positive outlook, your encouragement and your kindness
We will forever be thankful that God placed the perfect people in our path at the perfect time. We will forever be thankful that you were those people.
We will continue to pray all parents who come to you receive the same welcome, acceptance and compassion that we received.