Michelle Bailey sent me this powerful story about her Uncle and Aunt and their 'miracle' son who arrived after a series of miscarriages. Jack doesn't have Down Syndrome but the pressure to test was immense for his parents. It is a very poignant tale, the first of those I am showcasing in the run up to World Down Syndrome Day 2013.
|This beautiful family was completed by Jack|
Prior to conceiving, my husband Denis and I had already decided never to have amniocentesis or CVS. We had followed the Foresight pre-pregnancy program well before we decided to try for a baby. So, as all was planned, down to diet, mineral & vitamin supplements and lifestyle, we felt that we were very well read up on pregnancy & tests. We made an informed, conscious decision never to test. (At the same time, we also made informed, conscious decisions to opt for a home birth, to refuse the vitamin k injection, never to immunise, to refuse antibiotics unless absolutely necessary, and - horror of horrors to sleep with our baby in our bed and that I would breast feed until the baby naturally weaned itself - but that’s another story!)
We had a history of 5 miscarriages before our son Jack came along - all took place very early in the pregnancy - approximately 6 to 8 weeks. Doctors in the UK do not start to investigate until after the third miscarriage as a matter of course.
After the miscarriages started to occur, we also read up on causes of early miscarriage and at the time (late 1990's) new research was suggesting that anti- phospholipid syndrome (a blood clotting disorder) may cause early miscarriage. I had a mini stroke at age 20 and so, after doing my own research (no internet then!) and without discussing with a doctor or a midwife, I followed my instincts and self-medicated and simply took half an aspirin a day prior to & throughout my pregnancy. It seemed more sense given my medical history - that blood clotting factor was the issue - not a hormonal one.
This sixth pregnancy was monitored closely as soon as pregnancy was detected. Weekly, since week five with an ultrasound and weekly injections with progesterone. We had made our feelings known about not wanting any invasive tests from the start. I was not even at all happy with undergoing weekly ultrasounds, but had to trust all would be well. We were very happy with our level of care, and with the staff at the small, local NHS district general hospital which served a primarily rural catchment area.
However, as we were nearing the stage of gestation where tests could be undertaken we were constantly asked why we would not have the tests. Almost weekly, I was reminded that I was an "elderly primagravida" - 39 years old they would point out - "high risk".... We then would quietly point out that we had made our feelings known, they were recorded in the notes and as we were already "high risk" for miscarriage, “no tests thanks”.
We always felt that the midwives assumed that we were uninformed and stupid and irresponsible and that they couldn't believe we would make that decision. Their attitude meant we never did admit to the half dose aspirin!
Assumptions about us were clearly made and instead of simply having our wishes respected we found that we finally had to spit the dummy and angrily justify our decision to a midwife and make her record our notes in such a way that we were never asked the question again!
My husband Denis pointed out that he was a special needs careers counsellor - working closely with his young people and their families. I was fortunate to know people with special needs including having a family member with Downs babysit me as a child. We had to get angry and say that the thought of aborting a baby because it was not deemed "perfect" or "normal" we personally found distasteful. With hindsight - I wonder if we would have had an easier time if we had just said "for religious reasons" we were against tests.
But why should we have to lie?! Our wishes should have been enough. No way were we going to jeopardise this special pregnancy for Down, Spina Bifida - whatever condition!
Finally, because we got angry and raised our voices - we were listened to. Denis pointed out that to have our personal wishes ignored about not wanting to abort a baby simply because it was deemed because of my age "at risk" of not being "perfect" was disrespectful. To be regularly asked why we had not had tests and the implication by staff that we were selfish and misguided was distressing to us.
Our specialist had told us very early on in the pregnancy, that if we could get to the magic 20 week mark we stood a good chance of going full term. We had to get angry and say were were distressed and anxious enough to get to that magic 20 week stage without having further stress heaped upon us. We stated again, that for us, having invasive tests that in themselves could cause a 1 in a 1000 or 2 in a 100 risk of miscarriage was a risk we were simply not prepared to take.
No more were we asked....
5 years later, and by then living in Australia, I underwent a series of blood tests to discover why I was no longer even able to conceive a brother or sister for Jack. The test results showed I had TWO inherited blood clotting disorders. Each with a 50% risk of miscarriage. The hematologist looked at Jack playing on the floor near his desk and called him our "miracle baby". We finally confessed to the aspirin! So after all, it looks like the aspirin and not the weekly progesterone injections had done the trick maintaining my only pregnancy that went full term.
Jack remains our only child.
We decided we would not go down the route of hormone injections and possible IVF in pursuit of a brother or sister.
We are content with our one loved and much longed-for special “miracle” child.
Every child born is a miracle in our eyes - EVERY child is perfect...................
Some are more “special” than others.....
And our world is a better place with them in it.