For Oscar Leonardo Martin

Hi, I’m Bethany, Oscar’s mum. I have made this video in memory of Oscar, to show how loved he is, and to raise money and awareness for the charity, Positive About Down Syndrome.

Oscar was born on 13th September 2019, with an antenatal diagnosis of Down Syndrome, and a heart condition called an AVSD, which is very common in babies who have DS. It meant there was a hole between the top two chambers of his heart, and a hole between the bottom two chambers. We were told before he was born that he would need heart surgery when he was a few months old.

However, it was only after he was born that we discovered he also had another heart condition called a Coarctation of the Aorta, which is where the aortic arch of his heart was too narrow. That meant that he was transferred to Glenfield hospital, where they specialise in congenital heart defects, and he had heart surgery at four days old.

Oscar recovered slowly but surely, and we were able to bring him home when he was one month and one day old. He still had the AVSD, and he also had a very leaky valve in his heart, which meant that he was technically in heart failure. This meant that he couldn’t feed via breast or bottle, as the coordination of sucking, breathing and swallowing was too much for him. Tommy and I were trained in how to tube-feed him while he was at home. Although we got the hang of it, it was never easy. There was always the fear that something was going to go wrong, and the constant worry that he was going to pull his feeding tube out and we’d have to go to A&E (which did happen). He also had reflux and was sick a lot, which added another layer of panic, as him vomiting while being tube-fed wasn’t good.

In his 15 weeks and 3 days of life, we only spent 5 weeks and 2 days at home in total, which was broken up by hospital stays. At one point, Oscar got bronchiolitis, which meant he needed to stay in hospital for a week, on oxygen. But the time that we had with him at home was precious, and we treasured every second of it. He was the calmest baby you could imagine – he barely ever cried, he slept through the night (although we still had to get up to feed him every three hours), and there was nothing he loved more than a cuddle.

By December, he had suddenly started having episodes of screaming non-stop, which was very unlike him. I tried to dismiss it as normal for babies to cry a lot at first, but I knew that something was wrong. One day, he cried so much that it completely exhausted him. One second, he was screaming, the next, he fell asleep, went floppy, white, and was breathing faster than I’d ever seen him breathe before. An ambulance came and rushed us to hospital (during which time, he perked up like nothing had ever happened – typical!).

Oscar was in hospital for a few days before the first scare. I had expected to be able to take him home that day, but when I entered the ward, I found nurses around his bed, as his heartrate had suddenly skyrocketed for no apparent reason. Although it came back down, he began to struggle more with his breathing, and the next day, he was taken to Intensive Care, to be put on a CPAP.

By the end of the week, he was transferred back to Glenfield Hospital, as he needed to have his AVSD surgery sooner than planned. However, he couldn’t have it immediately, because he was showing signs of having a virus, and then one of his lungs collapsed. He was put on a ventilator to re-inflate the lung.

A few weeks passed of him being in hospital. Once his lung had re-inflated, he was still struggling with his breathing, which showed that he truly needed the heart surgery as soon as possible. They planned it for the following Monday. But a few days later, on the Friday night before his surgery, I got a call from the ward that they had found a new problem, and it was serious.

I rushed to the ward in my pyjamas, where they told me that he had a serious bowel infection called Necrotising Enterocolitis. His tummy had been growing over the last few days, which everyone had noticed, and he had suddenly started being sick, too. This prompted them to investigate, and the x-rays showed that things were very wrong inside his bowel. The doctor told me that this was serious. He said that the plan of action was to stop feeding him for a minimum of two weeks. He said that some babies stay the same for a while, and then get better; but others stay the same for a while, and then get worse and don’t make it.

The next morning, just a few hours later, he was drastically worse. He had also developed sepsis, and was suddenly fighting for his life. The doctors and nurses worked around the clock. The nurses were rushed off their feet, trying to keep up with his needs, as one thing after the other deteriorated. One consultant worked over 24 hours, staying by his cot nearly the whole time, fighting to keep him alive. By the end of the day, they finally managed to get him stable.

Over the next few days, he stayed the same. With some things, he even seemed to get a bit better. This was Christmas week. We celebrated our first Christmas with him. He had more Christmas presents than any three month old would ever need. He spent most of the day in a sedated, paralysed state, but just as we were leaving to spend the night at my parents’, he briefly opened his eyes. Merry Christmas, Oscar.

We spent Boxing Day at my parents, frequently calling the hospital to check on Oscar. He was doing well. His numbers were even better. But when we returned that evening, we saw that his tummy had started to grow again. The next day, the doctors watched carefully, as he began to show signs of getting worse again.

On Saturday, he went into surgery. My parents and sister came into the hospital so that I wasn’t alone. We just had a drink and returned to my room, when a nurse knocked on the door and asked me to go with her. I was confused as it had only been such a short time and, scared, I asked my mum to go with me.

In the dreaded room of Bad News, the surgeon and nurse sat us down. The surgeon explained that almost all of Oscar’s bowel was dead. It wasn’t compatible with life. That moment, when they told us that our baby was going to die, was the worst moment of my life. We had to call Tommy, who was at work, and tell him over the phone.

The doctors decided to give him two days, and then they would operate again. The plan was that he might have a chance to live if they removed his bowel, and put him on an IV feed for a few years, until he was able to have a bowel transplant (which I later learned had never been done on a child with Down Syndrome). Those two days were the longest days ever. The night before his next surgery, I didn’t sleep. In the morning, we knew that the doctors were in an MDT meeting about him, and it seemed to go on forever.

Then we were called into the Room again. The doctor told us that because his heart still needed surgery, and the IV line would go into his heart, it couldn’t work. There was nothing they could do. All of our hope crashed around us. Our baby was going to die.

We called our families to say goodbye. We had hoped to have at least until the end of the day with him, but by mid-afternoon, it was clear that he was struggling. I held him in my arms as they turned off his life support. He died, surrounded by family, and surrounded by absolute, unending love.

Oscar was the bravest, strongest person I have ever known. He fought until the end. He was a true warrior. During his life, I kept a Facebook page called A Little Extra Chromosome, where I shared his journey, to try to change society’s perspective of Down Syndrome into a more positive one. I never imagined that his life would touch so many people. I connected with the charity, Positive About Down Syndrome, who gave us so much love and support.



More information about DSUK Positive about Down syndrome: 

Positive about Down Syndrome (PADS) was created in 2017 to share the real-life experiences of everyday families who have a child with Down syndrome. Our aim is to reassure expectant and new parents about the realities of loving and raising a child with the condition in modern Britain today.

We are passionate about ensuring everyone including new parents and health professionals alike, understand that there is nothing wrong with having Down syndrome. There is an amazing community of people who offer support, guidance, lots of fun, laughter and opportunities.

In 2019 we distributed more than 125,000 leaflets to maternity units across the UK. We have also collaborated with the NCT, Bounty, Emma’s Diary, The Royal College of Midwives and The Royal College of Obstetricians and Gynaecologists to raise and promote awareness.  We are part of a large network of support groups across the UK and we can put new & expectant parents in touch with other parents local to them. We run popular closed Facebook groups for both expectant and new parents which give a wonderful opportunity for peer-to-peer support. We also have a page for midwives to share best practise, disseminate information and promote positive awareness.

Many local support groups and individuals have contributed towards the cost of design and production of our materials. PADS provides the majority of resources to maternity units, GP's surgeries, clinics, schools and health professionals across the country free of charge. In order to sustain our current commitments and to develop new resources, we are asking our friends and supporters to consider making a one off donation or regular contribution towards our work. We are all volunteers, so every pound donated goes directly to producing and distributing our materials.

£10 pays for posters and cards for a Children’s centre
£20 buys literature for a GP’s surgery for a year
£100 pays for counselling for a new or expectant parent
£200 pays for literature for an average sized maternity unit for a year

Finding out that your baby has or may have Down syndrome can be a lonely, worrying and overwhelming time - we support new & expectant parents by providing them with the information, knowledge and support they need. We also offer independent counselling from a highly qualified experienced counsellor.

Please help Positive About Down Syndrome point parents in the right direction when they want to know what raising a child with Down syndrome may look like for their family. We are already making a difference but need your help to reach more parents with the lived perspective shared by our wonderful PADS families.


Please consider donating to help PADS change more families’ lives, and keep showing the world how incredible our children are.
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Organiser

Danielle Nolan 
Organiser
Thaxted, East of England, United Kingdom
DSUK Positive about Down syndrome 
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