Noah and Ayla’s Story

By Yvonne Gilbert

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Our journey started in October 2016 when I found out I was pregnant with my first child. I was just 19 and in my first year of college where I was studying social studies in social care. As any young girl would be, I was scared, but I always knew I wanted to be a mammy and was overjoyed to be blessed with a beautiful little baby growing inside me.

Early on in my pregnancy, I started bleeding. I was so afraid that I was losing my baby. I went to the local hospital near my college and had a scan. There was a heartbeat and everything seemed okay.

I had an early scan because of all the bleeding I was experiencing. My mam came with me. The sonographer took ages and was going over the same places. I knew something was wrong. She then said that the baby had fluid around its head and neck and she wanted to get a senior doctor to take a look. I was brought to a different room and had to wait what felt like a lifetime, nervous and shaking as I didn’t know what was next. Finally the doctor came and scanned me. She confirmed that my baby had extra fluid around its head and neck. I asked, “What does that mean?” She said, “Your baby might have a genetic condition such as Down Syndrome or Edwards’ Syndrome or Patau Syndrome.”

I was told to go home and decide if I wanted to have an amniocentesis. I was asked to choose whether to have it done then or wait until I was 16 weeks. I decided to wait until 16 weeks as I wanted my baby to grow more before having it done as there is a risk of miscarriage and bleeding with getting it done.

Once I had the test done, it took weeks for the results to come back. I prayed so hard that it wasn’t Edwards’ Syndrome as I knew what the chances of survival were. They phoned me on the 7th January 2017 to tell me that my baby had Edwards’ Syndrome. I will never forget that date or that phone call for as long as I live. I knew the second I got on the phone as the doctor had a shake in her voice. She told me that she would see me in clinic to “discuss my options”. I remember just crying into my mother’s shoulders. I did not know what was going to happen, but I was afraid and felt so alone.

As you do, I Googled Edwards’ Syndrome and as I’m sure you are all well aware, Google would scare anyone half to death. It always shows the horror stories; never the good news stories about surviving children with Edwards’ Syndrome.

Before being pregnant, I was so naïve. I used to think you got pregnant and had your baby. I had never really heard of anyone losing their baby or having a sick child. But what I did know was that I’d love my child no matter what syndrome it had or didn’t have. This was my baby and I was going to love him no matter what, like any other child.

The majority of my pregnancy went smoothly after I stopped bleeding. I had check-ups every two weeks, but I ended up getting pre-eclampsia  at 30 weeks and was admitted to hospital where I stayed for three weeks and was then let home to rest. I got out on the Friday evening and was back up on the Monday for a scan. All was okay. I was back up the Friday for another scan; everything was okay and there was a heartbeat. But later on that evening, I got a really bad pain in my side. I thought nothing of it and just continued on with things as I was back up on the Monday for another check-up. Over the weekend I couldn’t get Noah to move. I was trying not to panic.

On the Monday morning I set off for the hospital with my dad. I can’t explain the feeling I had, but I knew in my heart that Noah had passed, but didn’t tell anyone. I hoped I was wrong, but on the way up I saw a beautiful rainbow. I knew it was a sign from Noah that he was at peace now. I went in to be scanned and they couldn’t find a heartbeat. I waited for my own doctor to come and scan me and she said the dreaded words no mother or father wants to hear, but yet so many have. She said, “I’m sorry, there’s no heartbeat”. I just started to cry. Even though I knew it was always a possibility, it’s still the worst news and feeling in the world and you never expect it to actually happen to you. In that sentence, so much hope, love and the future is just gone; all in one sentence that will stay with you for the rest of your life.

But what came next, no one could prepare you for. Preparing to meet your child you would never hear cry, you would never see grow up and knowing you were going to have to let them go forever.

The next few days all rolled into one. I didn’t know what to expect or even how to feel at times. This journey is overwhelming and that’s okay. I was so angry at myself and at God because I thought, “Why me? Why my baby? What did I do to deserve this?” It takes a long time for you to really stop asking yourself those questions. Even four years on, they sometimes pop into my head, but I try to think of the positives; how Noah choose me to be his mammy, that I carried him for all of his life and that all he knew was my love.

When I went in to hospital on the Monday evening, I was given a tablet to help put me into labour. Tuesday was all about making memories with Noah; taking pictures of my bump, reading to him even though he had gone and talking to him while he was cosy inside me, because soon he would be gone forever and every second counted. His memory and the memories we made together, nobody can ever take them away from you. Wednesday morning I got the gel to start my labour and Noah was born on 26th April 2017 at 7.18pm, weighing 2lbs 7oz.

I can’t explain it, but a feeling of calm came over the room. I remember my bereavement counsellor said you would feel Noah there with you and you definitely could. I have talked to many mothers of angels who have said the same.

The moment they place your lifeless baby on your chest is a feeling like no other. There are so many emotions running through your head, but honestly the only thing you will do is stare at the beautiful baby they place in your arms. No matter what they look like or what features they have, you are going to love your baby and think they are perfect in every way. You have been waiting for this moment for months and you finally get to meet your baby.

The next few days you just make more memories with your baby, such as taking pictures, dressing them, washing them, reading to them, singing to them and letting your family meet your beautiful little angel before it’s time to say goodbye; one of the hardest things any mother or father will ever have to do in their lifetime.

But I promise you, you will never regret giving your baby the chance at life and letting them decide their own fate, because the second your baby is placed your arms, all the pain and heartache will have been worth it just to meet them.

While I was pregnant on Noah, I got some bloods done to see if I had the gene and to see if that’s how Noah got Edwards’ Syndrome or if it was all the luck of the draw. It turns out I did have the gene. I have a balanced translocation of both my chromosome 18 and 21, but mine balance out so it doesn’t affect me.  But if I have any more kids, they could have either Down Syndrome or Edwards’ Syndrome or a combination of both or they could have none, so I have a one in three chance of having a baby with no chromosomal abnormalities.

The way I see it, why be afraid of the unknown? I knew I feared never getting the chance to be a mother again more then I feared having another child with special needs. I prayed every night to Noah that when he thought I was ready, he would send me a child to love and cherish.

Month after month I got a negative test until finally in June 2018 I got my big fat positive. We were over the moon, but scared as you would be after a loss. It changes you and pregnancy is never the same. My pregnancy went very smoothly and there was no sign of any abnormalities. I didn’t opt to get an amniocentesis this time because it wouldn’t have changed anything. I was going to have this baby regardless of any diagnosis it may have. I would love them no matter what.

Later on in my pregnancy I got quite sick and had a clot in my left leg, so I needed to get a filter in my neck so I could deliver Ayla safely and the clot wouldn’t spread to my lungs. I was induced and Ayla was born on 7th March 2019 weighing 5lbs 5oz. The most beautiful little girl I could ever have imagined. Everything looked to be okay with Ayla- she was crying and breathing and feeding- but once we were back at the ward, I noticed Ayla looked very yellow so I called the nurse.

That’s when everything changed. Ayla was taken from me and my bedside was filled with doctors and nurses. I hadn’t a clue what was going on. Ayla had jaundice and was taken to the NICU, but doctors noticed she had some facial feature abnormalities or what doctors call “dysmorphic features”. To me she looked perfect, but they noticed she had low set ears, a high roof palate and her eyes are closer together, and clenched hands. All these are signs of Edwards’ Syndrome, so they organised genetic testing.

Ayla was in NICU for a week and a half because she had a seizure, so she was transferred to ICU, where she had another seizure and difficulty feeding, so was fed using an NG tube. Once I got home, Ayla was still very slow at feeding. We were home for just one week and Ayla ended back up in Crumlin Children’s Hospital, where we stayed for two weeks because Ayla had bronchitis. We were home for three days and Ayla ended up being rushed back in because she was struggling to breathe. We were there for a week and she was taken to ICU as even with high flow oxygen, her oxygen levels were dropping. She was in hospital for four months in total and we found out during that time that she did in fact have partial Edwards’  Syndrome, but she also had partial Down Syndrome (she has 40 mb extra chromosome 18 and 7mb extra chromosome 21, which is called derivative chromosome  or an x marker chromosome.)

We also found out the reason Ayla was getting sick so much and not feeding was because she was aspirating her milk (which means the milk was going into her lungs). Before we discovered why Ayla’s oxygen levels were dropping so much, her doctors wanted to have a meeting with me. I had no idea what the meeting was about or what to expect but I did not expect to walk into a room and be told I should make my child “comfortable”. But I fought for my daughter’s life in that meeting and I continue to fight for her life today. Ayla may have a life-limiting illness, but with the right supports, our kids can thrive and survive.

Ayla then got what’s called an NPA (Nasopharyngeal airway). This keeps her airway open and helps her to breathe. It was found that Ayla had sleep apnoea and this was why her oxygen levels were dropping so much. She had the NPA for three months and then got CPAP; a mask she wears at night to prevent her from stopping breathing in her sleep.

Myself and my mam trained to be her carers so we could finally bring Ayla home where she belongs. Ayla got discharged on 13th June 2019. It was the best feeling, yet nerve wrecking as this was the first night I had to solely care for Ayla myself, but I knew I could handle anything that was thrown our way and so could Ayla. Ayla was doing great and we were managing fine with both her NG and feeds and suctioning her nose. I never thought I would feel so comfortable changing the tubes, but it’s like anything, once you get used to it you can do it with your eyes closed.

Ayla spent much of the first year of her life in hospital.  She was in hospital for four months and once discharged we were back and forward to Crumlin every three weeks with bronchitis. Winter was hard on her. Ayla wasn’t thriving and the NG was starting to irritate her. I fought with doctors for the peg as I knew it would be a big benefit to her and would solve a lot of her problems.

In January 2020, we got another diagnosis. Ayla was in early puberty. I had raised concerns because I noticed she had a little breast tissue. She has not started on the injections yet to stop puberty as her hormones are slow to rise and the doctors don’t want to start them until they reach a certain point. Ayla finally got her peg in April 2020 after fighting with doctors for six months to agree to getting it done. She started piling on the weight and stopped getting sick all the time. We have only had three admissions since and one of those was for a planned sleep study.

Developmentally, Ayla is doing great. She is able to sit by herself and pick things up by herself and she can say dad and baba and she can roll over. She is not yet crawling or walking, but she is just starting to bear weight through her hands and her legs are very strong and can stand with assistance. Ayla is a very cheeky little girl full of personality and makes the funniest faces. She loves music and when you sing to her, and her favourite things are kisses and cuddles.

Doctors may describe Ayla’s life as life-limiting or incompatible with life, but I believe that with the right supports, our kids can survive and thrive. They are compatible with life and love and they deserve the right to life just like every other child does. They will decide their own fate in life. These kids will show you a new way of living and make you appreciate all the little things in life and all their milestones, no matter how big or small. They teach you what true love is and they will amaze you every day by how strong and resilient they are. No matter what, they always have a little smile on their face and a twinkle in their eye.

You will never regret meeting your beautiful baby; whether they pass in the womb or have a short life, they will change your life forever. No matter how hard it may be, getting to hold your baby in your arms will make you the happiest mammy in the world. No one can ever take away your memories and they will stay with you forever. Your babies give you the strength you need to carry on on the good days and the not so good days.

Until we can hold our babies in our arms, we will forever hold them in our hearts. After all, no one knows what our hearts sound like from the inside other than our babies and that’s a bond that can never be broken.

If you are reading this and are going through this or have gone through this, then I have just one thing to say to you and that is you got this!