Michael Gerard Young

Michael Gerard Young: A life of cuddles and songs and being surrounded by love.  

We just held him and lay with him, telling him stories, and telling him how much we loved him and how proud we were to be his parents.

We were so happy when we first found out we were pregnant, and so excited to tell everyone the news. My two sisters were also pregnant at the same time, it was a very happy time.
 
Everything seemed fine when we attended our 12 week scan. We were unsure whether or not to find out the sex of our baby. We weren’t worried at all at this stage, but when I reflect, I recall telling my friends something didn’t feel right. The doctor saw a slight problem in the artery but told us it could be nothing to worry about and so we were referred to have this looked at further.
 
A fetal medicine doctor saw us and told us he could see a cleft lip with a single cord artery. He said this could be an indication of something more serious but that we wouldn’t know unless we got an amnio test, which we declined at that time.

Worry and fear

However, after talking to family and friends, we decided that it might be a good idea to have this testing done. We wanted to know what was coming. We were told that this test carried a risk of miscarriage and, looking back, I don’t know if I would have done it as the rest of my pregnancy was filled with worry and fear.
 
The test consisted of a needle being put into my belly and extracting the amniotic fluid that surrounded my baby. I remember this as being painful and quite an emotional experience.
 
My doctor, along with the midwife, explained that the test they had carried out came back positive for Trisomy 13.
 
He said he was sorry for the news, and told us that our baby was incompatible with life and then offered  us a termination. I could feel our baby kicking as he said the words. We declined immediately.
 
I could feel my baby moving, and I loved him from the moment I knew he was there.
 
 I injured my back and ended up on crutches, this made things really tough. Three weeks before I was due we were asked if we had contacted a hospice, but when I thought of hospice I just thought of death and didn’t want to do it.

What if he lives?

Then a lovely midwife spoke to me and said to just speak to the hospice and see what they have to say, so I arranged for a woman from the hospice to come and see me. We had decided on the name Michael at this stage and the woman from the hospice said something that no one had said to me yet: she said “what if baby Michael survives? What if he lives”.
 
I was shocked, I didn’t know he mighht as no one had ever raised that possibility with me.  
 
I had never even considered that he may come home from hospital, it was never mentioned to me that this could be possible.
 
This was so refreshing to hear, and so I put a plan in place for what could happen if baby Michael did survive. They shared with me the support they could give, and this meeting took a massive weight off my shoulders.
 
I packed my hospital bag as we decided to deliver at 37 weeks. I was very unwell, and I couldn’t do it anymore as I was still doing school runs and taking care of my children at home. I don’t know how I got through it but I just kept going.
 
Knowing I was protecting baby Michael in my belly and getting him to the end was what kept me going.
 
When we arrived at the hospital we were shown to the snowdrop room, It was a normal delivery suite, but a lot calmer and quieter.

Baby Michael is born

Labour started at 9am that morning and when 9pm that night came around I thought to myself that I couldn’t do it anymore, I was exhausted. But baby Michael decided he was ready.
 
At exactly 10:18pm on the 2nd of February 2022, baby Michael Gerald Young was born. At first, it was hard to tell if he was breathing or not.
 
He lay on my chest and my partner was with me. We were all crying with emotion and didn’t know if he was alive or not. The doctor gave him a bit of oxygen and baby Michael came around quite quickly.
 
The hospital sent for the priest and we phoned family - we were expecting him to go quite soon so everyone got there quickly. Our family members got to meet him and the priest baptised him - this was so lovely, this was amazing to experience as a family.

With my dad...

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A few hours later baby Michael was doing so well, sat on his daddy’s knee making noises, like any other baby. He was beautiful, I had given him  droplets of my milk through a little dropper.
 
I thought to myself: my baby is a miracle as this wasn’t what the doctors had told us what would happen at all.
 
We spent the rest of that night skin to skin, singing to him, and telling him stories and all about his brothers and sisters.
 
The following day, baby Michael was still doing so well, the doctors came in and once again bringing bad news, telling us they were unsure how long he would live for, that looking at him they would give him maybe two days. Nothing positive was said: we weren’t told how we could cherish these moments. Nothing encouraging, even after just delivering a baby and Michael doing so well. It was very upsetting.
 
From day one I knew we wanted to go with whatever baby Michael chose, and I believe he was telling us that he was fighting and doing well.
 
The day after giving birth, they decided to give baby Michael a tube that would get fluids into our baby. My breastmilk had not come in yet so he was given some formula, This was ok as I was still able to give him small bits of colostrum. I knew due to his cleft lip it would be difficult for him to suckle, but I asked the doctors anyway and they told me it would be too much on his heart to even suckle on a bottle.
 
The first night, like any newborn he was hungry and when he got the tube and was fed he settled down. We kept having to ask the nurses if we could feed him, they were only giving him enough to keep him hydrated but we felt he was hungry as he wouldn’t settle. A mother always knows what her baby needs.
 
All through the night we got to feed him. We got a bit of sleep that night and my partner got to stay with me.

I was on cloud nine with my baby who I believed was a miracle and all the lovely feelings that come with being a mother.
 
The bereavement midwife came to speak to me, she explained the possibility of going to the hospice with baby Michael.  A member of the hospice team came and explained exactly what would happen. That we would be transferred by an ambulance to the hospice where people could come to visit. They assured us that they would be there on hand meanwhile giving us as much free time as they could. So we made the decision to go with the hospice.
 
Before we left the neonatal doctor came down to do another scan on the heart and some of the problems that they thought our baby had in the womb weren’t actually there. He was going to the toilet and doing everything a normal new baby would do. We had so much hope.

I'm going home...

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At the Hospice

So we followed baby Michael’s lead. That evening we got to the hospice and it was lovely. We had two big rooms, a living room and a bathroom to ourselves.
 
We were able to give baby Michael a bath. I got a breast pump and was able to give him my breast milk through the tube. We were cosy and comfortable and able to sleep. This one-on-one time was so special to me and my partner. Baby Michael was doing so well and there was a doctor on hand who would check in on us. She told us that he was doing well, everything was going smoothly.
 
In the hospice when we were together as a family, with no doctors and nurses surrounding us, it was such a precious time to us.
 
We had access to a bath and our own space to spend time together. We really got to be his parents here and bath him if we felt it was right and take care of our baby.

We really felt like a normal little family during this time. He slept on our chests which was precious to us. Skin to skin was where he seemed his most content, these are memories we will never forget.
 
The charity ‘Remember my baby’ visited us in the hospital, the girls were so kind to us. They captured so many beautiful photos of all of us with baby Michael. I have them hanging in my home and we love them dearly. These were amazing memories for our family with baby Michael that we are forever grateful for.  It means everything to me to have a photo with all of my six children to have and cherish forever.

When we were in the hospice we had the opportunity to do the clay prints of our baby’s hands and feet. He settled so much when the lady placed his hands and feet into the warm clay: she explained to us that it reminds him of being in the womb.
 
We still have the baby grow from that day with the clay on it. Our friends were so generous to us at this time. They were buying clothes and Moses baskets and everything we needed without ever having to be asked. I have all of his memory cards and clothes at home with us. He was the most content little baby, we were so at peace with him. He was never left on his own between myself and his daddy.
 
It was a real safety net in the hospice to know a doctor was on hand if anything did go wrong. We spent the Friday to the following Wednesday in the hospice and during this time we spoke about wanting to get him home, and be a part of the family. The hospice were a great help and put everything in place to bring baby Michael home. They helped me sort birth certificates and everything, they really took all of the pressure off of us. They were so, so good to us and so kind.
 

Coming Home

That Wednesday we got to bring our baby home. We put him into the car seat and took him home from the hospice.
 
This was simply perfect. Our son was home, with my closest friends and family surrounded with love. He was warm and cosy. His siblings got to meet him and spend precious time with him at home. We remember fondly lying in our own bed with him telling him stories and singing to him. We wouldn’t change this time for the world.
 
The hospice supplied us with two small canisters or oxygen and a small bit of paracetamol, if we thought he needed it.
 
Getting him home was amazing, to meet his brothers and sisters. All my friends had been around to set up the house and get a bouncy chair and a Moses basket set up for baby Michael. They had bought him clothes and he had everything he needed.
 
Our first night home was a lovely evening. We sang to him and spent loads of time together.
 
The second day was so lovely we got to feed him and spend as much time with him as we could. Family and friends got to come and see him again.
 
This same day there was a few dusky periods that were quite difficult. He stopped breathing at one stage, but we were able to bring him around. This happened a few times that same day which was very frightening.

On Friday he was a lovely colour, he was so settled and we got to have more visitors come and see him. We then realised that we was growing a tooth out of his cleft. The cleft specialist told us it was ready to come out. But our baby boy grew a tooth on day six and lost it on day nine.
 
The cleft specialist was so lovely she told us it was ok for him to suck and so he did. There was no problems on the Friday and we got another lovely day.  A midwife visited us on the Saturday morning and she was so kind. She weighed him for us and was delighted with him putting on so much weight.  It was a beautiful Saturday morning.

It was his time

Later on, I realised he had become quite limp again and my partner lifted him. We just knew and so we took him upstairs and we couldn’t bring him around as easily, we both knew that he was telling us it was his time to go, and so we just held him and lay with him for an hour or so on our own, telling him stories and how much we loved him and how proud we were to be his parents.
 
It was very peaceful, he let us know it was his time and we let him go.We then called in the children and explained to them what had happened and that baby Michael had gained his angel wings. I was always open and honest with the children but their hearts were broken.
 
Afterward we called the family to deliver the news and then the doctor. Then we at there with him: I didn’t feel the need to do anything but sit there with baby Michael.
 
My family and closest friends came including my eldest daughter to be with us and offering any help they could. I just held him and allowed his loved ones with me to cuddle him also.
 
We got to spend the day with him in the room as the doctor didn’t arrive until that afternoon to confirm it. The hospice contacted us to offer out a cold cot but I kept him in bed with me. I got to take him down and wash him with warm water and change him, if felt strange but it was what I needed to do this was precious to me.
 
He was never left on his own. My family called the undertakers and they were so respectful of my son and all of us, really lovely. I had baby Michael in my arms speaking to him, this felt perfectly normal to me. The following days were a blur. We didn’t have an open house as we felt it would be too much for us: just those closest to us came.
 
Our support system was amazing, we had people taking us food and money to help towards funeral costs which we were so grateful for. We were unsure all along whether to bury baby Michael or cremate him: this was a horrible decision and not one any mother should have to make.
 
Instead of shopping for prams we were looking at coffins which was a horrible feeling.
 
During the day we had to place him in the cold cot, which wasn’t what I expected - it resembled a Moses basket and he looked so perfect in it. Again, baby Michael was never left on his own. 
 
Valentine’s Day fell at this time and the lovely girls at the hospice had a vest made that read ‘Mammy’s wee Valentine’ which was so special. It was a surreal time, but so peaceful at the same time. I was feeling so many emotions.

The Street was Lined with people

It was so nice that baby Michael wasn’t taken away from us at any stage as I don’t think I would’ve been able to cope with that. In the end we decided to open his own wee grave as we wanted him to have his own space.
 
Our family and friends were so good to help us out. The undertakers provided us with a coffin which we didn’t have to use until the very last minute. We had a beautiful singer come to our home which was really special to us. I got to put his hat and cardigan on and he looked really cosy when we placed him into the coffin.
 
That’s how we like to remember him: that he was warm and cosy and loved.
 
It was so heart-breaking to have to say goodbye, which is expected. My partner Michael carried him out of the house in the white coffin, and the street was lined with people. Our little boy was so valued and respected and loved.
 
Butterflies were our thing and I seemed to see them everywhere from the hospital to our home. We had beautiful butterflies to release showing our love for him. I had a butterfly tattooed on me to have a piece of baby Michael with me forever. 
 
We have so many happy and healing memories of our little son. And we have thatvcery precious memory when my baby boy was born alive, as we weren’t expecting it at all.

After he was born those first few hours were so beautiful. He was able to lie on his daddy’s chest, and feeding him the first bit of milk was so special for us. Listening to his little noises, he was the most perfect baby, and we were ecstatic to have him with us, and wrapped up in our love for him.
 
Those moments were so precious, and I will cherish them forever in my heart. Being able to wash and change him in the hospital and pick out his clothes we had got him. The immense joy he brought us was immeasurable. My family and friends spoke of him as a little miracle and everyone was overjoyed and had so much love for our little boy.

We had him for 10 precious days after he was born, and he was surrounded by love for every minute. We’re so proud of our little son. They told us that he was incompatible with life, but he was already kicking and saying hello.  He came to meet us, and he was compatible with love. He brought us so much joy, and he’s part of our family forever. 

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TRISOMY 13 or PATAU'S SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage but research has also found that children with Trisomy 13 or live on average for 7 days after birth, while almost 31% live for more than a month, and almost one in 10 live for more than a year. Many studies have reported a significant decrease in median survival over the decades and speculate that this might be due to the withholding of medical care, especially when there is a prenatal diagnosis.

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