Myla Faith McCabe

My daughter Myla

Charlene McCabe's little baby daughter was diagnosed with Edwards Syndrome, also known as Trisomy 18.

This was something I had never heard of until the day my daughter was born, and although throughout my pregnancy I knew that she had some problems with her kidney and bowel, I never expected the outcome.

It all started when I was 20 weeks pregnant which was when I was told that Myla had an enlarged kidney. I was brought back at 24 weeks to learn that it was slightly bigger and because of that they were going to keep an eye on this.

At 28 weeks I was scanned again and was told she had dilated bowel loops and so naturally I began to panic. Like most worried mothers I was scared, especially since I had four normal straightforward healthy pregnancies before... this all came as a terrible shock. At 30 weeks I was scanned again and was told that although she has gained some weight from the 28 week scan, she was under the average weight.

23 weeks my number 5!!!!!! Our wee family loves you so much xxxxx xxxxx xxxxx xxxxx xxx

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

I also was told there was a little fluid on the back of her brain. Upon hearing this news, I completely lost control and was inconsolable, I was so scared of what was going to be. Because of this, I was offered an amnio test, as the doctors predicted that this was chromosomal or genetic related.

They give me a few days to think about it, but I decided not to have it as I was told there a was a very small chance I could go into labour after having this procedure. I thought with my luck I would be the one to go into labour, and because I was told my baby girl was under weight, I thought I was doing her better by keeping her tucked up safe and warm and gaining weight and continuing on with my last ten weeks. Little did I know what lied ahead.

I had four other children previous to Myla who were all healthy weights and sizes, therefore this made me panic more as I carried Myla because she was smaller and I didn't feel her move as much as the others. I convinced myself that she was just goning to be a wee petite and tiny baby that may have needed extra care, or maybe an operation or medicine to fix her problems when she was born.

Myla with her big sister Leah

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

On the 30th of June this year (2013) I went to bed normally and laid waiting to feel her move, but I felt very little movement. I did this again on the next day (1st of July) but felt nothing. So on the morning of the 2nd of July I got up with a mothers instinct that something wasn't quite right. It was like my body was telling me that something was wrong. I was petrified! To give myself some peace, I decided to go to the hospital just to hear her heartbeat because I figured that would put my mind at ease that everything was ok. I arrived in hospital at 1.10 pm and explained my concerns and I was given yet another scan.

The doctor scanning me explained that I was 34 weeks pregnant and that my baby girl was very tiny indeed. The doctor wanted me to have an amnio test that day and that I would receive the results in two days. At this stage I still didn't have a clue what Edwards syndrome was. So I had the amnio by a different doctor. By this stage myself, my husband and my mum were so scared, as he discovered on another scan that Myla also had a hole in her little heart.

I thought I was gonna pass out and faint - I was screaming and my heart sank. They then did a heart tracing test on the baby and put the Doppler on me. They me that Myla wasn't coping very well with Braxton Hicks contractions that I began to have. Before I knew it, I was told that I needed to be rushed for an emergency Caesarian. I was not mentally or physically prepared for this, so as you can imagine, I was in a terrible state. I got taken to delivery suite at 5.00 pm and by 6.15 pm my baby girl was here. I was shocked, scared, excited, all these things rolled into one.

Little Myla Faith xxxxx

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

A doctor brought her to me and she laid looking at me with her beautiful blue eyes. I was then told she was going to the neo-natal unit. I couldn't stop crying and begged them to get me back together as quickly as possible so that I could go to be with her. Seconds felt like hours.

The doctor then came back to me with tears in his eyes and said that Myla had Edwards syndrome. I began to say "well that's good, you know what it is so you can fix it now", but he shook his head at me and suddenly my world and hopes and dreams of my baby number five began to crumble. What he was telling me I couldn't and didn't want to believe. He said he was going to take me to be with her because things weren't good. I was wheeled round and and immediately wanted my skin to skin with my baby girl. By this stage all of our family was with us. I lay there looking at this perfect and amazing baby on my chest wanting the moment to never, ever end.

She looked at me as if to say 'mummy I wanted to meet you as much as you wanted to meet me'.....at 8.10 pm she grew a set of angel wings and went on her endless journey to heaven. My world was turned upside down, I felt like I was getting stabbed in the heart over and over again. Why me? And why her? Life isn't fair!

Since Myla's passing, we've spent a lot of time raising funds for Ulster Hospital - the hospital that Myla was born in. To date, we've raised several thousand pounds and have every intention to continue to raise much more in her, and others like her, memory.

Myla's brothers and sisters with t-shirts in her memory

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

I wanted to share this with whomever takes the time to read it... I made a promise to my angel that her memory will live on forever and that she will always be thought about everyday. Loosing her is the hardest thing I've ever dealt with. Because this condition is quite common, but a lot of people know nothing about it, I decided to share my story and make my angel proud. If this helps some other parent of a Trisomy child, I feel it may do some good sharing my story.

Thanks for reading this. All for my angel Myla Faith McCabe, born 02/07/13 weighing 2 pounds and 12.7 ounces. Fly, fly little wings, fly where only angels sing xxxxx

Tonight little MYLA, your Daddy and I attended the Forget Me Not Focus Group memorial service in the Ulster Hospital. This I'm very glad to say is the group I have joined, that is made up of bereaved parents of babies and children who sadly are in no longer with us.  Every parent tonight had the opportunity to place a flower in memory if their little one!!! I was so proud as again I was recognised for being the proud mummy of you

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

24 weeks my baby girl....Look what I got, an early Christmas present from your Daddy, he couldn't wait to give it to me!!!!! Now you can hear my heartbeat again as you are placed beside it. Just wish it was the real you, someday somewhere my wishes will come true......... xxxxx

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

TRISOMY 18 or EDWARD's SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage before birth, but, quite contrary to recent reporting, studies have found that the average duration of survival for children who lived until birth with Trisomy 18 was 14.5 days; with 39% of babies surviving for more than a month, while 8.4% survived for more than a year.

Rasmussen SA1, Wong LY, Yang Q, May KM, Friedman. Pediatrics. Population-based analyses of mortality in trisomy 13 and trisomy 18. 2003 Apr;111(4 Pt 1):777-84.JM. http://www.ncbi.nlm.nih.gov/pubmed/12671111

Links Medline Plus Irish Support Network International Trisomy Support Myla Faith's FaceBook Memorial Page Myla Faith's story in the Mirror Newspaper