Devons Story

Our Son Devon

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

Myself and my partner Derek found out I was pregnant in January 2019. Sadly I had a miscarriage the previous November and we 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, we were having 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 on Devon’s brain.

Trisomy 18

This was the first indication of Trisomy 18. We had never heard of this.

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 screening blood test.

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

At this time Derek was measuring my bump with string because we had such hope that everything would be okay. He would say, look your bump is growing, and he marked the length of the string each week.

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.

We were lost and had no idea what was ahead of us

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. It was so scary for us both

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.

We decided to continue with the pregnancy and let Devon lead the way, I wanted to leave the choice up to him, I couldn’t take that from him. And so began the biggest journey of our lives.

We are eternally grateful that we got to have this time together as a family.

Making memories...

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We attended appointments fortnightly , Devon was always a bit behind in his growth but nevertheless, continued to grow, kick move and have hiccups. I craved pastries and cookies so much, Devon definitely had a sweet tooth. His pet name was “my Sweets”

Every morning I woke with the thought of “ is this the day he’s going to die” it was the unknown that was so difficult. I am a very positive person and it took a lot of emotional effort to remain like that but with the support of Derek, my family and friends who were amazing through it all and kept me strong enough to keep going.

It was extremely difficult not knowing if I would wake up and he could be gone. So we did our very best to make every moment count.

Due to the excess amniotic fluid it was difficult to feel Devon move at times , this made it scary as I was always monitoring his movements, its so difficult to describe that feeling. The apprehension, the anticipatory grief.

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

Everyone came to celebrate you

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Aren't I getting big...

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Our hearts shattered

Despite the diagnosis I really enjoyed my pregnancy as I knew it was me his daddy and Devon together. Derek said afterwards he would watch me sleeping holding my bump tightly and it broke his heart that he felt helpless, seeing Derek love his son like that made me fall in love with him all over again.

Devon was a true fighter we fought together, each scan he was moving and kicking

Our consultant and hospital were truly amazing, the care and attention myself and Devon got from them, was to me and Derek something we will never forgot and be forever grateful for these people were angels to us when we needed it most.

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. It was so important to us that we met Devon alive. Derek was by my side through this entire time despite having to sleep on a chair and birthing ball.

Before going down for Devon to be born 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

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

Everything was beautiful the labour the staff the room he was a born in, the fact our families were welcomed to meet Devon as they sat waiting anxiously for him to arrive and our amazing midwives made the experience so special. Again this was so important to us and they made it easy for us to have the special time with Devon

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. I cannot describe this feeling

Welcoming our baby boy

Our families got to meet him and hold him and it was so beautiful, just perfect. 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 him. Devon became restless that night and they gave him suction and morphine that night. The next morning I broke down as I felt this was the beginning of the end. I knew it was his time and that he was starting to go.

From Grandma...

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

He was so comfortable there 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”.

All together...

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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 sister roisin an amazing older brother Noah and and two wonderful rainbow baby siblings called Harley and Aylah whom all know all about their brother Devon.

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

He has made me a better person

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. He was an angel in every way.

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

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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