I wanted to share with you the story of a lady called Boo Lowe, and her family. She and I both belong to a particular Facebook group, which is where I saw her story. It is shocking, but perhaps the most shocking thing is that it is not unique. Many members of the Down’s Syndrome community have faced similar pressures as expectant parents, from medics who seemed intent on steering them down what I call the ‘test and terminate’ route. And now we hear that behind the closed doors of a consultation committee, considering the roll-out of the new prenatal test, that the cost of testing every mother should be weighed against the potential cost to the NHS of providing healthcare for persons with Down’s Syndrome. So, the value of our children’s lives is to be measured, and not against that of another human being even, but against the price of an inanimate testing kit!
I have copied her words verbatim from the thread, so that there can be no misquoting or misunderstanding. This is her own story, in her own words. But, I repeat, her experience is not unique.
“… This is my story …To say I was thrilled to find out I was pregnant is an understatement of colossal proportion!I was 44 years old, in my second marriage with two teenage children from my first and had longed for this baby for a long time.
As a family, we were all very excited about the new journey we were on. We couldn’t wait to welcome this new life into our World and share new adventures with a new little person.
From the onset of the pregnancy, pretty much, I was sick daily. This was new for me and I remember saying how this felt different to my last two. I took it as a good sign that my hormones were high and even considered that I might be expecting twins or more!
At 12 weeks I was called for my first scan – the energy in the room shifted as the radiographer spent longer than normal without speaking and measuring the area at the back of the babies neck. I was so happy to see my little one, a little flickering heart, moving, wriggling, kicking, it took me longer than it should to pick up on the vibes. We were told that the nuchal fold measurement was bigger than normal – 5.8 instead of below 2. Not knowing what that meant or might indicate, we asked all the questions we could think of. Genetic disorder was the answer to all. Further testing, how old was I? Have a cup of tea, someone will see you in the other room, do you want the scan pictures? No, it’s ok; you don’t need to pay for them this time…we were given literature on amniocentesis and C.V.S. tests to determine what genetic disorder our baby may have. We were told that although Down syndrome, T21, was the most probable, the high nuchal fold measurement could also be an indication of Edwards syndrome, T18, or Pataus syndrome, T13. I asked if there were any other indications that something was wrong with our baby and no there wasn’t but we should really find out soon so we could decide the best course of action.
We drove home in silence, the first time of many journeys to come where we could find no words.
I spent more hours than I can remember googling all the ‘syndromes’ possible and the tests they had advised. I was in a fog but clung on to my little belly and prayed hard that my confusion and worry wasn’t somehow passing through my veins and into this little life.
The first phone call came the next day…we were invited to meet with a lady who would explain everything to us about testing, the possible results and what we could do about it. The meeting was horrific to me. I remember her describing all the negative issues associated with genetic disorders. T13 and T18 not being life viable and T21 having multiple life threatening, life shortening or life compromising issues that basically added up to it not being wise to continue with the pregnancy. We were told in incredible detail about how the baby would be removed from me. How a regular D & C was not possible after 12 weeks and what the procedure would be. I felt even more sick than usual and numb to all the information that I didn’t want or ask for. Such a dark picture was emerging in front of me. I was sinking at a time when I wanted to fly.
We discussed everything with the children and decided together that I would have the C.V.S. test so that we knew for sure which path we were on.
Before I had a chance to let them know of our decision another phone call with a sympathetic voice urging me to not delay in moving forward with this, the sooner the better.
I was in my bedroom on the morning of the day after the test when the phone rang again, it was the doctor who carried out the procedure, and she wanted to tell me the news herself. I’m sorry but the test is positive, Trisomy 21, Down syndrome. Long silence. I asked if she could tell me the sex of my baby, yes she could, it’s a girl. Thank you, I said. She told me I would be contacted soon to discuss everything properly but she would tell them to give me time to let the news sink in.
I remember, my first reaction was relief that it was Down syndrome and not any other genetic disorder they had described with even darker prognosis’s.
I sat on my bed and said out loud, “a girl” …then the tears. Of course there were tears, I mourned in all the ways we do when we mourn, with anger, confusion, desperation, the loss of the healthy baby we were supposed to have. I wanted it to be wrong but I also wanted my baby to know that I LOVED her so very much. I felt guilty, so so guilty that I had done this to her, it was my fault. But, with all of it I still felt an incredible bond to my baby girl. I apologized to her over and over, angry at myself for being sad and promising her that it would be ok.
Again we talked as a family and it was the strength of the children that cemented our final decision that same day. When we discussed termination with them they were 100%, absolutely, no way, not on their watch, adamant that that was not an option and I was so relieved and proud of them. This was their sister and that was that.
I want to say that in no way ever would I judge anyone’s choice in similar situations. It is not and will never be, my place to pass my opinions onto others but this was our decision, our life choice together.
It was the next day when we were called again. I told the person on the end of the phone that we had made the decision to continue with the pregnancy and I was asked if it would be ok to meet up so we could properly discuss everything. There we were told of the many medical issues Down syndrome can be associated with. Heart abnormalities, respiratory issues, increased chance of childhood leukemia, early onset dementia, hearing problems, vision problems… do we really want to have to face all of this? We were given the option again to terminate and told that it was relatively simple. Again we said that it was not our choice to do that.
More scans were booked in including special heart scans and each one showed no abnormalities but the calls kept coming.
Altogether, from 13 weeks to 24 weeks I received 9 phone calls, each one gently and not so gently urging me to look at the medical facts and perhaps think again about our decision. I was told about how the quality of life of my daughter would be not good; she would be a burden on the family, my other children. She may not be able to walk or talk, she may be deaf, blind, have thyroid issues.
It was a battle to fight off the negativity and a fight I am so glad I won. I feel so sorry for other mothers that are maybe not able to see through the darkness to where I am now.
My daughter is 4 years old, she does have an issue with her heart but no surgery is scheduled. She started at mainstream primary school last week. This morning when I dropped her off a little girl in her class came up to me and told me how she had been hugged lots in the playground yesterday by my daughter. I smiled and she said to me ‘ I love her already and we only just met’.
Please, Medical professionals, I beg you, understand that Down syndrome is not just what you see. You told me of darkness where there is so much light. You told me of sadness and there is so much joy. My daughter is a worthwhile member of society and already in her 4 years has changed the lifes of everyone who knows her and is capable of so much more than you let me know. I managed to shake of your negativity and look towards a positive future with my daughter forcefully guiding the way.”