Devons Story

Our Son Devon

Justine and Dereks baby son, Devon, was diagnosed with Trisomy 18 at their 20 week scan

I found out I was pregnant in January 2019. Sadly I had a miscarriage the previous November. I had a feeling that I was pregnant again.

We were delighted with the news.

I noticed I was quite small but thought nothing much of it. I attended my 20 week appointment and it went fine the doctors didn’t pick up anything out of the ordinary..

At this appointment we found out we were having a little girl, a week later we then were told it was a little boy. We named him Devon.

This was an anatomy scan and things were picked up that the doctors couldn’t share with us at the time but there was a slight concern raised at this point.

We were asked to return the following Monday but in the meantime we were so worried that we booked a private scan that Saturday where they saw a cyst.

Trisomy 18

This was the first indication of Trisomy 18.

When we returned to the scheduled scan on the Monday we were informed that there was indications but that it might be nothing, so we did a blood test.

The two week wait for these results was the most anxious time of my life.

We returned after the two weeks and I will never forget that day, we were given the news that our baby had Trisomy 18.

I will never forget my heart and stomach sinking when the news was delivered, it was pure heart break.

I was lost and had no idea what was ahead of me.

The doctor performed another scan and told me I would need an amniocentesis to be 100% sure but I had never heard of this before.

The doctors explained the procedure and said their is a slight chance that it could lead to a miscarriage.

This was a lot to digest in one appointment, but all I was sure of was, that I wanted to keep this baby no matter what.

As repeal of the eighth had just been passed in Ireland I did consider this a number of times during my pregnancy, due to all of the emotions I was feeling and just being so terrified, but deep down I knew I wanted to keep my baby.

I wanted to leave the choice up to him, I couldn’t take that from him.

And so began the biggest journey of my life.

Making memories...

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

I am eternally grateful that we got to have this journey together as a family.

I attended appointments fortnightly , he was always a bit behind but nevertheless, continued to grow. Every morning I woke with the though of “ is this the day he’s going to die” it was the unknown.

My family, friends and partner were amazing through it all. It was extremely difficult not knowing if I would wake up and he could be gone. Due to the excess amniotic fluid it was difficult to feel him, this made it horrendous, its so difficult to describe that feeling.

Aren't I getting big...

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

Our hearts shattered

My partner had his own doubts at the time but continued to help and support me however he could, we agree now that we wouldn’t have done anything differently.

The weeks turned to months, we found out in May of 2019 he was sick and the following July held a baby shower we called “Devons Day” a beautiful day surrounded by loved ones that I will never forget.

Despite the diagnosis I enjoyed my pregnancy as I knew it was me and him together. We fought together. Our 38 week scan was when the beginning of the end began.

We were told by our consultant that the blood flow to the umbilical cord was beginning to weaken. The news was delivered that if we wanted to meet our baby boy alive that he would need to come out now. I returned that same night to be induced.

My partner stood by me through this entire time despite the poor facilities in the hospital.

Before going down to my induction I was listening to Vicky from Every Life Counts (who were supporting us) on a radio interview where she spoke about our story (with our permission) and what we were about to embark on, this was when I realised what was about to happen and things were about to get real.

With Vicky from Every Life Counts

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

My labour wasn’t as bad as expected when I compare them to my previous children.

Cuddles from Mam

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

Everything was beautiful and our amazing midwife made the experience so special. Everything went smoothly with the delivery, meanwhile our families awaited his arrival in the hospital.

At 10:20pm on a Thursday night our baby boy came into the world. He was the most beautiful little boy and we were full of joy. Our family got to meet him and hold him and it was so beautiful, just perfect.

Welcoming our baby boy

We stayed over night and in the morning he was still with us and fighting on.

His colour had improved and I felt like he was going to live and keep fighting. We had no intervention, no oxygen or tubes he just lived on his own.

We had the opportunity too take the most beautiful pictures and have our boy christened.

After this the three of us got to spend some time together as we wanted to soak up every minute of it. He became restless that night and they gave him suction and morphine that night.

From Grandma...

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

The next morning I broke down as I felt this was the beginning of the end. When I returned to the room I knew it was his time and that he was starting to go.

This was without doubt the most difficult time of my life. Me and my partner lay in the room and held him until he passed. I felt as though it went against everything your meant to do a parent, we couldn’t fight for him or ask the doctors to help him, we just had to be their with him as he slipped away which I cannot even begin to describe.

This was without doubt the most difficult time of my life.

He has made me a better person

Deep down we both knew this was the best choice for our son. He was so comfortable their with us and peaceful as he gently slipped away in our arms.

He was always surrounded by so much love. “If love could have saved him he would be here with us today”.

He was truly a special boy who lived for 38 hours, he came, he saw, he conquered all of our hearts, and he still does to this day.

Four years on and we talk and think about him every single day. He is my son and will be until I can be with him again some day. We wouldn’t change our journey for anything in the world. He changed my life forever.

He made me a better person, a kinder person and seeing him fight has made me so strong I thank him for that. He has a beautiful older brother Noah and two wonderful rainbow baby siblings called Harley and Ayla whom all know all about their brother Devon.

We include Devon on every Christmas and Birthday card we write his little sister looks just like him, every time I look at her I see Devon. When they are older they will know all about their big brother Devon and how wonderful he truly was.

Thank you mammy and daddy for loving me always...

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

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