|"Our little Henibean"|
It was at my 18 week scan that doubt started to creep in and that bit by bit life stated to turn upside down.
Initially, it was a concern that the fetus' brain had an area (choroid plexus) in which they had found a number of cysts. I was told not to worry as "they usually disappear by 24-27 weeks"..... what I wasn't told was that choroid plexus cysts can be a marker for a chromosome abnormality.
For the next 10 weeks I diligently returned to the antenatal clinic for regular check to see if they had gone, however by 28 weeks they were still fully present! University college hospital at that time had better equipment to do more thorough scans and so they packed us off to London to see the consultant for a 30 week appointment. He, hopefully would be able to tell us more about what could be the problem and give us the information we needed.
That day in London we were told that they were 90% certain that our baby had something called Edwards Syndrome or Trisomy 18 and told that these babies were "incompatible with life" and usually die.
We could opt to have an amniocentesis that could confirm this diagnosis or just wait it out and highly likely have a still born baby. We were told that "IF" the baby was born alive it would die very quickly. They even showed us various text book pictures of the tiny Edwards babies which looked like they had indeed been taken after a silent birth. No hope. Matter of fact!
In one instant our hopes and dreams and pictures of life with this child were torn apart, shredded in to tiny pieces.... and stomped on. The future we envisioned no longer possible, replaced with a huge gaping chasm of "unknown" ahead.
It seems looking back, that it was one of those times where time seems to stand still or slow down and you feel like you are not really present but experiencing it as an observer.... from a distance. A kind of numbness.... that it's not actually happening to you but to someone else.
We were given half an hour to think about it..... we walked round some of the shops near the hospital in a daze, crying, talking, wondering and praying silently for guidance as to what to do. By the time we returned to the hospital we had decided to have the amnio. If our baby did have Trisomy 18 we wanted to be 100% sure.....
What was supposed to be a two minute procedure somehow lasted twenty minutes plus. A quick injection through the abdomen in to the amniotic fluid to collect a sample was replaced by a lengthy stabbing session of the chord...the only thing I can think of was that the consultant was trying to attempt to induce a miscarriage right there. To this day I believe that he took it upon himself to rid us of OUR little girl. Thankfully our baby was determined to make it in to this life and survived the ordeal.
We had made the decision that if SHE survived to birth we wanted her to be surrounded by those who loved her and in a place we could all feel comfortable... we wanted to love her as long as we could and if she were to die .....to die in peace... at home.
It was a long wait. Every day filled with not knowing. Wondering if the movements I felt inside of me would be the last ones. Forty weeks came and went with no sign of arrival. We even moved house on the day she was due to arrive....crazy or what? Thankfully she knew the best time to come...41, 42, still no sign.
The midwives were all extremely supportive of our decision to wait it out and let whatever was meant ...just be... and so finally at 43 weeks our baby decided to make an entrance in to our lives. After only 2 and 1/2 hours of intense labour she made her first appearance.... a teeny 5 lb beautiful girl who was very much alive...but we wondered...for how long?
Here are some photos of her first few hours...
If you would like to find out what happens next you can read Heni's story part 2 here
& Heni's story part 3 here