Hard to share very difficult subject. But being open about this may give another mother or father a sense they are not alone in this journey.
Hi all here is the second part of journey to becoming parents, it is only over the last couple of years ,I have finally been able to talk more about our daughter Amy who passed and to be at some peace with what happened this is an important one for me because writing the book and saying a proper goodbye by honouring her in the the book, has brought this peace to my heart.
For any parent the loss of a child is something you never really fully get your head and heart too understand.
But for this perticular pregnancy and birth it was made alot harder by having a diagnosis before the birth made on what was seen on the scans. Only to find out that diagnosis wasn’t true, and that there wasn’t any answer. We have our own thinking’s on what caused it but not something we could ever prove.
So I was 21 a mother of a 16 month old son who had a serious op when born, the I found out on new years eve 1995 that I was expecting again it was such a truly happy moment for some reason like I need Josh was a boy, I new this new one was a girl just an instinct , at about 8 weeks I was hit by awful stomacher bug lasted about 10 days once I was over that I had a threatened miscarriage a scan at about 11 weeks showed the baby was still there and was normal in development. At 16 weeks I had the next scan because I was losing a lot of blood. It was then in the scanning room the look on the lady’s face who was doing it went deathly pale she was moving the scanner over my tummy measuring then said she had to leave the room and speak to the doctor there was just this deathly silence my heart racing I know it something was not right the doctor came in and looked for themselves followed by another,
They told me to get dressed and they would come back and speak to us soon.
They said they thought she had a condition called Meckel gruber syndrome it was rare and only about 15 cases in the world at that time, But we would need that confirmed by a specialist hospital they booked an appointment for 2 weeks later at a top London hospital at George’s , they would also refer us to a genetic counselor. They said the prognosis was not good.
At that moment my husband an I were just so numb and in shock holding hands we left the hospital for the excrutiating 2week wait. We were hoping it was all some big mistake you heard even tin that time that sometimes they make mistakes, there was only tiny movements at this point but I could feel her move here her heart beat as they scan. She is here and alive.
Travelling to the appointment
We decided to take the train leaving early in the morning we arrived at the train station I think about an hour before the appointment so stopped to have some breakfast before walking the rest of the journey. The same hospital who saved our son when he had the piloric stenosis. So there was this trust that they would know we walked in the room I layed down the lights switched really low it was a very though but quick scan and they confirmed our nightmare and made it real , she had polycystic kidneys barely any fluid because of it but that was not all her heart was affected and the worst was yet to come she had a large encephlocele her skull was not developed and her brain was just outside. Prognosis FATEL!!! I still have that letter. They spoke about termination but that is something I just couldn’t face doing I wanted nature to take its course. I don’t regret that decision. I decided to carry on with the the pregnancy anyway her heart was beating she was alive.
They told us I might miscarriage she might be stillborn, or she could live up to 3 days. But they wouldn’t recusitate her.
We went home in silences intermittently telling meaningless jokes it wasn’t real was it, my mind still not accepting the crule hand fate had dealt us.
Next what do we tell everyone especially Josh he was a baby he loved talking to my tummy noing his baby sister was there.
She moved ever so slightly on the journey home oddly comforting.
We told everyone and lots of sympathy but mostly awarked silence,
What could anyone really say at that point anyway other then be quitely in the back ground.the next couple of weeks was visiting the midwife’s while waiting to see genetic councillor.
She was not very nice in her delevery infact she was blunt and rude, given us the odds on it happening again she just said there was a 50% chance future children would get it not to have anymore children and any children I already have might be a carrier. Maybe she was just doing her job of giving us the facts but it was so coldly delivered I just got up and left I don’t know if my hubby said anything but knowing him he did I just walked he caught up to me wrapped me in his arms I was devestated not my Josh too.
Anyway the pregnancy continued more scans still confirming she had a heart beat but had stopped growing.
Then at 31 weeks gestation I began to loose alot of blood my husband was working about 30 minutes drive away my mum ordered a taxi it took forever to come, we had black bags and towels to put on seats the hospital then was only 5mins away we already called ahead to let them know we were coming in.
Labour had begun I was asking for my hubby I don’t know how he got there but we heard him screech into the car park and then he was by my side we were put in a side room and had this very young doctor who promised to stay and deliver even though her shift finnished in an hour.
The birthing process was natural I wanted no pain killers but after 5 hours of pushing other than being emotional and tired they and my hubby took the decision out of my hands and they gave me a pethidine injections, the reason I didn’t want pain killers what if she was born alive and I missed it missed them pressious moments, at this point the doctor hadn’t left the room and it was probally as devasting for her to deal with than it was for me she did say she hadn’t had to deliver a baby with this devastating diagnosis it was so good and comforting she went above and beyond to see the birth through.
30 later minutes later Amy was born alive and yes he’s disabilities and head was very noticeable as was her poor little bruised face her heart beat for 25 minutes before she sadly passed in her daddy’s arms me the meds made me so sick.
She opened her eyes and her little youngest poked out. I remember her perfect little hands the most more than I remember her poor head.
It wasn’t long before about four doctors came and took her a way to examine her,.
When they brought her back I removed the blood stain on the white ribbon of her bonnet that covered her head and the large encephlocele.
They handed her back and let us stay for the rest of the night with her my husband’s nerves ment he slept I lay our daughter between us and spent all night just holding her perfect little hand, they gave me a photo her hand and foot prints, a cutting of her hair and a poem about still births in the back of the little booklet. She wasn’t still born though she lived. The morning came and they came to take her we had to sign forms for her autopsy. I eyes were blank they asked if we wanted them to sort out the funeral and we said yes at first untill they said she would be burrows in an unmarked grave with three other little babies. So I refused and sorted it myself it took about 6 weeks to get her back for funeral. So hard to hand her over even harder to spend the night on a maternity ward hearing other babies crying while you lay next to your baby who just passed.
Even harder walking out of the hospital seeing other parents taking there healthy babies home. While you walk out having just given birth and you are empty handed breast full of milk ready to feed but noone to nurture. We registered her birth and death on the same day.
The funeral was small close family a few friends,
My husband carting this tiny whitr coffin the short distance from the car to place on the ground where she was to be layed at peace ,and the midwife’s and a priest giving her a blessing before she was lowered into the ground it was sweet service although I can’t remember that part it is blank I was going through the motions but not really there my little son being looked after at home to young to understand the process of death. He just new his sister went to heaven and that when ever he saw the moon she would be watching over him .
The results of the autopsy
They came after the funeral many months later the abnormalities to extensive to be Meckel gruber .
Her heart had holes, her head ,no kidneys , club feet , scoliosis, the extent meant that it wasn’t Meckel gruber it was chromosomal either as they came back normal in myself and her. Further genetic tests were though nessacary but for some reason the appointment never came.
Just nothing and a life of wandering if it was something I did wrong, no answers is horrible. But they said there was no reason I shouldn’t have another child in there opinion and that was the best bit of the worse possible situation.
So that is my story of Amy’s short life. but a life that mattered so very much too me. I was blessed to have her despite it only being for a short time.
She taught me what it was to be a mother just like all my kids have to never give up hope, to be resilient
I there is one thing I know now something that bugs me alot is when you tell someone you kids are autistic and they say at least they look normal.
They make these very unfeeling comments without knowing a person’s whole story so no autism as challenging and difficult as it can be for my children it could have been worse. I am thankful I did not have to bury another child all my kids are perfect and beautiful to me.
Sorry if this makes for sad or uncomfortable reading it is my story and my daughter’s story.
I never thought I would ever be able to put into words just what it was like at that time. And my words maybe don’t even show the feelings of that moment . But now it is said and told she lived. These are things I couldn’t put into the book because it had to be child friendly. Grief and loss of life, I like to remember the person they were before there character there essense the memory.
Much love Faye xx