In their own words, a couple of the FoD family have agreed to share their stories.
The Journey of My little Miracle – Liz & Clara
Waiting anxiously on the 1st April 2011 yes ‘April Fools day’! and I finally got that call from the Fertility Nurse ‘congratulations Mrs Chilton your beta hcg blood test is postive’ its shows a high reading of 500bhcg a very high pregnancy rate!!! OMG did I cry that day, it had finally worked after 10 years of desparately wanting a baby I WAS PREGNANT!
I Cried and cried, tears of joy, my little frozen embryo had worked!!! The little embryo was transferred on a red nose day! So I knew my little baby would be a bundle of fun! As the pregnancy went on I was so sick!!! Vomiting at anything, smells, tastes of foods you name it! Kept saying to myself this little one so wants to be here, its taking everything out of me! 12 week scan came, we were so excited but nervous as well, all seemed good on the scan, given pictures and I was telling the world! That after noon, received a phonecall from the screening nurse, ‘Elizabeth your combined blood test result has come back extremely high risk at 1:2’ we want you to come and discuss this with the consultant tomorrow!!! Felt sick! What I said you might as well tell me my baby has an abnormality! That evening was so upset, kept thinking my god what is growing inside of me! Then would think no theyve got it wrong its all ok and just a stupid inaccurate blood test! Went to see the consultant, I was in tears in his office, 2 male doctors and my hubby sat there, I was surrounded by 3 males! Had to laugh when I think back when I burst out in tears the look on the mens faces, all looking for tissues for me! We went onto have to CVS diagnostic test, I wanted to know what was happening, somehow I wanted to feel safe again, Im a person who needs to know (think thats the noseyness in me) I was so scared the baby wouldn’t be compatable with life, always remember my husband saying he wouldn’t be bothered if the baby had downs syndrome, I used to think that before I was pregnant, but now faced with it, I so wasn’t sure! My experiences so far with the medical profession were good. On the 3rd June 2011 sick again with fear, the phone rang it was the consultant, I knew straight away the CVS was positive for something, why would the consultant ring me! And not a nurse! ‘Elizabeth Im giving you the news you didn’t want to hear’ your baby has ‘downs syndrome’ shaking trying to take it all in, ‘ill be ok I said I need to see my husband’ still cant really remember the conversation. After putting the phone down I ran outside i couldn’t breathe, I walked around the garden saying ‘no’ ‘no’ why me why me, I was hysterical! My husband was just walking down the path coming in from work, its positive I said its got ‘downs syndrome’ I just fell into his arms ‘it will be ok Liz’ don’t worry we will be fine’ he said. My thoughts were different, what shall I do was going around inside my head, shall I have a termination and not tell my husband, I cant have a child with ds, its not me, I don’t want it, Ive seen these elderly couples with ds children! Omg I cant! These thoughts were for about 10 mins! I then felt so sick, and thought my god its my little frozen embryo it wants to be here, this one worked, why shouldn’t it be here! I love this little thing inside of me, its growing and making me very very nauseous! A week after our diagnosis I was a jabbering wreck, I felt like id had a mini nervous break down! My body felt really shaky, but after a week I calmed down, I still loved this little thing inside of me but was so scared, I cried for a week, and then I seemed to be ok, I was happy, Id got my head around it, with the love of my husband, family and friends I knew all was behind us and it was going to be ok. I was very open about my baby telling people I was having a baby with ds, I joined support groups and got involved with the downs syndrome world! And it helped. I couldn’t wait for her to be born, I was so enthusiastic to give her the best life I could possibly give. I knew I was having a little girl and just couldn’t wait for her, my love for her grew stronger and stronger each day. We had a 3d scan at 27 weeks and it was fantastic, she was perfect, I was so scared of seeing her, I thought she was going to have 2 heads or something, but she was perfect. On the 22nd November 2011 Clara Elizabeth Chilton was born, at 38 weeks and weighing a tiny 3lb 14oz, by emergency c section due to me developing pre-eclampsia, she was perfect, I was in awe of her, since the day she was born I was floating and still am floating, my love for my daughter is immense, I had a journey a roller coaster some call it, but it was well worth it.
Kerri & Jamie
A few days before our 20 Week Detailing Scan My Husband and I were talking about possible outcome’s Like, What if our baby only has one leg Or Doesn’t have a skull. It did cross our minds that Our baby could have Something Like Down syndrome but we genuinely didn’t think it would happen to us, We Thought it only happens to older parents and Seen as though we are only 20 and 24 then that wasn’t something we needed to consider .
So we Bounded into our 20 week scan extremely excited to see our first baby on the screen, the Sonographer was excellent as she talked us through everything from head to two. Our baby had 2 legs, 2 arms and a fully formed head. Then Onto the organs up first were the Kidneys, then Liver All was perfect and then the heart, the sonographer stopped relaying the info she was seeing to us and the room went silent. After a minute or two my husband asked if there was a problem and The Sonographer nodded in an apologetic way and replied, ‘I’m afraid your baby has a congenital heart defect I will get the specialist in to speak to you.’ Straight away tears streamed from my eyes as my husband and I thought Oh gosh Specialists, this must be serious. In Walked a very professional looking woman, she sat us down and began to explain what was happening. She explained that a heart should have 4 chambers and 2 valves, but the middle wall of our baby’s heart had not formed causing just 2 chambers and only 1 valve. She explained that our son would need major open heart surgery in the first few months of life but that he stood a good chance of full recovery.
We took a deep breath in and we were ready to find out how our son’s life would likely be, but then she hit us with another Surprise. Baby’s with these heart defects often also have a chromosome abnormality, I didn’t really know what this meant but she explained About Down Syndrome Being the most likely of all Abnormality’s and Offered us A termination, Straight away I didn’t even have to think about it My Answer was No way. Then I was offered an Amnio but after a few moments my husband and I decided there was no point, we weren’t going to risk our baby’s life just for the sake of finding out as we were keeping our baby so it didn’t matter.
As the remaining months passed we had regular check-ups and Got to Visit Neonatal Wards to see what to expect in the first we while of his life. At 38 weeks Gestation On the 5th October 2010 into the world arrived our Son Jamie Alexander, breath takingly beautiful But Struggling a little. After A few blasts of Oxygen and what felt like forever I got to have a proper look at our son, and boy oh boy was he gorgeous I think at that point I knew he had down syndrome.
He was whisked away and I got to see him later on in the neonatal once I had recovered. A doctor came to speak to us, And Began by saying ‘ I’m very sorry But your Son Does have Down Syndrome ‘ So I politely Said to the doctor ‘ Why are you sorry ?, I really do not mind. Down syndrome is the Very least of our son’s problems. ‘
And So our Journey Had properly began, although it was short lived as our son was much more poorly than First expected and he passed away on the 26th December 2010 aged 11 weeks and 5 days old But we feel very blessed to have had him in our lives and Now Plan on adopting a child with Trisomy 21 once our 7 month old daughter is a bit older.