Noah and Ayla



Noah and Ayla: A tale of two trisomy babies and the love they brought

My name is Yvonne, I am 23, and the mother to two beautiful kids called Noah and Ayla who both have Edwards’s syndrome.

    

Our first pregnancy

Our journey started off back in October 2016, when I found out I was pregnant with my first child. I was just 19 at the time 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 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 was okay.

I had an early scan because of all of the bleeding I was experiencing, and my mam came with me, the sonographer took ages and was going over and 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 to be seen by the senior doctor. I was nervous and shaking, I didn’t know what was next.

Finally, the doctor came and scanned me. She confirmed what sonographer said 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’s syndrome, or Patau’s syndrome.

She told me my baby had Edward’s syndrome and that she would see me in clinic to “discuss my options”. I got off the phone and ran out to my mam crying.
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.

 

I was told to go home and decide if I wanted to have an amniocentesis - I was asked to choose to have it done immediately or wait till I was 16 weeks. I decided to wait till 16 weeks as I wanted my baby to grow more before as there is a risk of miscarriage and bleeding with the procedure.  

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 could be low.

They phoned me on the 7th of January 2017 and told me my baby had Edward’s 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.

   

Our baby had Edward's Syndrome. 

She told me my baby had Edward’s syndrome and that she would see me in clinic to “discuss my options”. I got off the phone and ran out to my mam crying. 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 Edward’s syndrome, and as I’m sure you are all well aware Google would scare anyone half to death and always shows the horror stories, never the good news stories about surviving children with Edward’s syndrome. It also said that having a child with Edward’s syndrome was 1 in 5000.

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 before or having a sick child, I had never heard of Edward’s syndrome before.

But what I did know was that I’d love my child no matter what syndrome he or she had or didn’t have, no matter what my child looked like 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 2 weeks, and I ended up getting pre-eclampsia at 30 weeks and was admitted to hospital where I stayed for 3 weeks and was then let home to rest and take it easy and back up every week for check-ups.

I got out on the Friday evening and was back up on the Monday for a scan and all was okay, and I went back home. I went I was back up the Friday for another scan everything was okay there was a heartbeat.

But later 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 and 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. It’s like you are living a dream and it’s not actually happening to you; you’re just playing the role of someone else’s life.

In that sentence so much hope love and the future are just gone - all crushed by 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 whom you would never hear cry; you would never see grow up. Knowing you were going to have to let them go forever ..

I went out to the car and had to tell my dad Noah had passed. I went home and got some bits and packed a bag for myself and Noah.

The thing is, once your baby has a life-limiting illness you can’t do what’s done in a normal healthy pregnancy and go out and buy a whole wardrobe full of baby clothes buggies etc.

All that is robbed from you. You pick up a few special bits of clothes that you think would never fit a baby and are like doll clothes as babies with Edwards syndrome are normally very small. Clothes that would fit in the palm of your hands.

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, it’s okay to be angry. 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, sometimes they pop into my head.

But then I try to think of the positives, how Noah choose me to go his mammy and I carried him for all of his life and all he knew was my love.

When I went in on the Monday evening I was given a tablet to stop the progress of my pregnancy and to help put me in labour.

Tuesday was all about making memories with Noah, taking pictures of my bump, reading to him, and even though he had gone, talking to him while he was cosy inside me because soon, he would be gone forever and every second counted.

He may be gone but his memory and the memories we made together- no one can ever take them away from you.

Wednesday morning, I got the gel to start my labour and Noah was born on the 26th of April 2017 at 7.18 pm weighing 2 pounds 7 ounces.

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

Outside, after I had Noah the nurses were singing happy birthday to someone; I remember for a spilt second I felt sadness and then had the thought they were singing to Noah.

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.

In that brief moment you forget everything else going on around you, or the nurses cleaning you up, or whatever it maybe, you are totally in the moment your eyes may be filled with tears, but regardless of the situation 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. We took so many pictures of Noah, dressing him, washing him, reading to him, singing to him – whatever helps to let you and your family meet your beautiful little angel.

Then it’s time to say goodbye - one of the hardest things and 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 and even for a little while get to know your child, seeing their face, who they look like, holding them close.

But I promise you, you will never regret giving your baby the chance at life and letting them decide their own fate

 

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 Edward’s syndrome or if it was all the luck of the draw. It turns out I did have the gene and 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 Edward’s syndrome, or a combination of both, or they could have none. So I have a 1 in 3 chance of having a baby with no chromosomal abnormalities or a 70/30 chance of having a child without any.

The way I see it, why be afraid of the unknown? Noah is my beautiful and perfect child and although I wish he could have stayed, I loved him so much. Even though it is hard to live on this earth without your child, 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, telling him that when he thought I was ready he would send me a child to love and cherish.

    

Empty space in my heart

After I lost Noah there was an empty space in my heart. I had so much love to give a little baby, and my chance was taken away from me. I knew I wanted another baby, not to replace Noah because no one could ever do that, but because I had so much love in my heart to give.

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 after a loss. My pregnancy went very smoothly and there were no signs of any abnormalities. I didn’t opt to get an amniocentesis this time because it wouldn’t of change anything, I was going to have this baby either way regardless of any diagnosis it may have it wouldn’t change anything for me 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 my baby safely and the clot wouldn’t spread to my lungs.

      


     

     

Our second baby Ayla

I was induced and Ayla was born on the 7th of March 2019 weighing 5 pounds 5 ounces - 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 features abnormalities or what doctors call “Dysmorphic features” which, to me she looked perfect, but they noticed she had low set ears, a high roof pallet and her eyes were closer together and her hands were clenched - all these are sign of Edward’s syndrome.

They sent away some genetic testing to see if Ayla had Edward’s syndrome. Ayla was in ICU for a week and a half because when she was brought up to NICU she had a seizure, so she was transferred to ICU and once in ICU she had another seizure and had difficulty feeding so was fed using a 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 2 weeks because Ayla had bronchitis.

We were home for 3 days and Ayla ended up being rushed back in because she was struggling to breath.

 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 4 months in total, and we found out when she was in ICU that she did have Edward’s syndrome, but she also had Down syndrome - she has an extra chromosome 18 and 7mb extra chromosome 21. This is called derivative chromosome or an x marker chromosome.

We also found out the reason Ayla was getting 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 didn’t not expect to walk into a room to be told I should make my child comfortable. A doctor who I had previously met and was the one who noticed Ayla abnormalities started off the meeting without even explaining to me how sick my child was and that he thought I should make Ayla comfortable. They didn’t want to treat her. With that I stood up and said, “What did you just say?” and I burst into tears.

You see, it seems to me like doctors don’t value the life of kids who have life-limiting illness and don’t give them a chance as they see it as prolonging their life of pain. Although Ayla was sick, she wasn’t in enough pain to just end her life. I fought for my daughter’s life in that meeting and I continue fight for her life today. Ayla may have a life-limiting illness but with the right supports our kids can thrive and survive.

“Children with disabilities are like butterflies with a broken wing they are just as beautiful as all the others, but they need help to spread their wings”

I recently saw a quote that said, “Children with disabilities are like butterflies with a broken wing they are just as beautiful as all the others, but they need help to spread their wings”. That’s okay, we all need help throughout our lives so why do they have to be treated differently or rejected just because they need help and support.

Ayla then got what’s called an NPA (Nasopharyngeal airway) and 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 3 months and the got cpap-  a mask she wears at night-time to keep 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, and where everyone was waiting to meet her. Ayla got discharged on the 13th of June 2019 it was the best feeling, yet nerve racking 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. Everything was worth it just to have her in the cot next to my bed – and how nice it was to sleep in a bed and not a pull-out chair which I had slept in for 4months.

Ayla was doing great and we were managing fine with both her ng and feeds and suctioning her nose and changing it. I never thought I would feel so comfortable changing the tubes as a mother you never think you are going to have to insert a tube into your child nose to her stomach so she can feed or change a tube that is keeping your child breathing but it’s like anything, once you get used to it you could do it with your eyes closed.

Ayla spent much of the first year of her life in hospital, she was in hospital for 4 months and once discharged we were back and forth to Crumlin every 3 weeks with bronchitis, the winter was hard on her.

Ayla wasn’t thriving and the ng was starting to irritate her, and she was bleeding from the ng. I fought with doctors for the peg I knew it would be a big benefit to her and would solve a lot her problems

January 2020, we got another diagnosis. Ayla was in early puberty. I had raised the concerns because I noticed she had 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 on her till the reach a certain point as once she starts she will be on them till she gets to puberty aged around 10 or 11.

Ayla finally got her peg in April 2020 after fighting with doctors for 6 months to agree to get her getting it done, we were admitted during covid and ended up having a different doctor than normal and I asked about her getting it on the Friday and finally she got her peg on the Tuesday. So just goes to show all you need is a doctor who values her life and the life of medical complex kids and don’t just write them off because of their diagnosis.

After Ayla got her peg, she was doing great she started putting on weight and stopped getting sick all the time and we have only had 3 admittances since, and one 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. 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.

       

My beautiful daughter Ayla

Ayla is a very cheeky little girl full of personality and makes the funniest faces. She loves all things musical and loves when you sing to her, and her favourite thing is kisses and cuddles.

Doctors may describe Ayla as incompatible with life but have you heard of the saying you shouldn’t always believe what you read in a book ... because doctors just go from what the book says about Edward’s syndrome and don’t see the real child.

With the right supports our kids can survive and thrive - they are compatible with life and love, they deserve the right to life just like every other child does. They will decide their own fate and just because they have medical complications doesn’t mean they aren’t compatible with life or their lives aren’t worth living.

These kids will show you a new life a new way of living, and make you appreciate life and all the little things in life. All their milestones no matter how big or small are celebrated. They teach you what true love is, and they will amaze you every day by showing you 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 live a short life, they will change your life forever, and no matter how hard it may be, just 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 baby gives you the strength you need to carry on, the good days and the not so good days.

 

Your baby gives you the strength you need to carry 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 sounds like from the inside other than our babies, and that a bond that can never be broken.

If you are reading this and are going through this journey now or have gone through similar then I have just one thing to say to you, and that is, YOU GOT THIS!

   

    

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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

 

Links

http://www.mattandginny.blogspot.ie/

http://theatypicallife.com/blog/

http://www.99balloons.org/

http://www.youtube.com/watch?v=th6Njr-qkq0 us

http://www.trisomy.org/