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Noah (18 Jan 2006 - 5 Jul 2009)

noah photo

Noah was born on the 18th January 2006, 33 weeks and 6 days early. He was born by emergency c section as he wasn't growing. The obstetrician wasn't sure if it was due to the placenta not working but Noah weighed 2lb 14oz and was totally gorgeous, and we were told that they were going to test for chromosomal abnormalities. We didn't think anything of it until it came back that he had Edwards’ Syndrome, trisomy 18. 

Like most people in that position we had never heard of it and we were told that 90% of children don't make their 1st birthday. We were devastated we were going to lose another child as our son Jacob was stillborn a year earlier due to negligence. Jacob had died due to of lack of oxygen. We were given some information printed off the internet by the doctor about SOFT and we looked into Edwards’ and contacted SOFT. 

A few days later we were called back to the hospital at 8.30am so we rushed down the A45 back to UHCW in Coventry. All the time I had a song in my head, don't give up on me baby by David Soul. When we got to the hospital we were told Noah’s oxygen saturation was very low and we could take him into a room and let him pass. We said no as we did not trust the medical profession after Jacob, although Noah was born in a totally different hospital.

We didn't give up and 5 weeks later he came home. We had oxygen installed and had the Diana nurses to help. Noah was on caffeine in hospital and without our knowledge they had taken him off it. Three days after we got home, Noah had an apnoea attack and we thought he was gone, but no, our brave soldier coughed and brought himself back. It happened again two days later on the Sunday and I vowed to get him back on caffeine, which I did and he was on until he passed.

So Noah came home and we started to live. We took him out to restaurants and on holiday to Center Parcs in Sherwood Forest which was fantastic. We just enjoyed him but always had the ‘90% don't make their 1st birthday’ in the back of our heads. We celebrated every month on the 18th with a cake, and on July 18th we celebrated his 6 months. We were in the local paper as we wanted people to know about Noah.

We also got involved with ACORNS, a children's hospice in Selly Oak Birmingham. Noah stayed there on many occasions and totally loved it. It was the only time he got into the hydrotherapy pool. We then had a lady called Donna who was Noah's play therapist. He really did enjoy his time with her and he flourished. The medical opinion was still negative but we didn't care. This was our son and we wanted to make the most of his life with us. We also stressed to them that length of life is not an automatic right for any of us. 

Noah's 1st Christmas was quite scary as he was poorly and struggled with his secretions but with antibiotics he got over it and the next big milestone was his 1st birthday. What a day that was. He was in the local papers and on BBC WM radio. He had done it and I felt like a huge weight had been lifted. Oh we still knew the realities but Noah was no longer a statistic. So we had his 1st multi disciplinary meeting with all of his health professionals and it was moving on. He was doing so well!

In June 2007 Mo and I took the decision to go to Prague. Noah stayed at ACORNS and we went for 3 nights. It was so hard leaving him but we desperately needed a break and we had our big break to Las Vegas booked in the November and wanted to do a short haul flight to see how we would cope first. We had an amazing time and when we got back we felt refreshed, although Noah was not impressed and ignored us for a few hours.

Noah was having physiotherapy at this time and his play therapy. We went to some groups, but in groups with able bodied kids I just didn't feel comfortable. Everyone was really lovely but they had no idea what we were going through, and I needed to be with people who understood our life.

noah debbie and mo

Well life ticked on quite happily and we went to Las Vegas, which was totally amazing but very hard to leave him. Noah’s second Christmas went well and he wasn't too bad, but we were old hands it by then and knew not to take him out from the end of November. We had respite from nurses, 7 hours a week and then a 4 hour slot once a month for Mo and I. We really enjoyed our time together and made the most of it.

Noah's second birthday approached. Who would have dreamed it... 2! We were so happy and he was on BBC Coventry and Warwickshire Radio. We celebrated his birthday as we had done the year before with some whopping cakes from Druckers and, lots of 'healthy' family and friends. We were very strict about bugs and washing hands, this was our son's life and we had to protect him. 

Mo and I went to Dublin in March for St Patricks's Day, which again was amazing and Noah stayed at Acorns. We went back to Center Parcs for our family holiday, which was awesome and the older children loved it. They could go off and do what they wanted and Noah could just enjoy being cuddled. At Noah's last meeting nursery was discussed, and he was going to start in September. Oh, my baby would be a big boy. So nursery got involved at Brooke Special School in Rugby and to mark this auspicious occasion we got Central TV to film him going.

It was the loveliest memory ever. Noah went to nursery on the 18th September when he was 2 years 8 months old. How many kids with full Edwards had gone to nursery? Very few. We were so proud. Noah had his third Christmas and loved it. He enjoyed the cuddles and the lights, and Donna his play therapist arranged for Santa to visit Noah at home. How wonderful was that! Noah's third birthday arrived and he had a few bugs but nothing out of the ordinary. We contacted the Sunday Mercury to cover his birthday, which they did and they also honoured him with a Wonder Kids Award. Oh we were so proud. So in June 2009 we went to Drayton Manor and Noah was given his award. I thought I was going to pop with pride. Who would have a thought a week later he would be gone. 

In May 2009 Mo and I had flown to Belfast to see some friends in their band. The lady I was sitting next to me asked about the story behind us being there so I explained about Noah, and her face just fell. She told me her daughter's friend had had a baby with Edwards’ two weeks earlier and was given such a bleak outlook. I gave my details but never heard from her.

Noah was also on TV again in June, this time for Zoe's Place, a baby hospice being built in Coventry. He was on BBC Midlands Today and again that was very special. We also went to the ground breaking and Noah met Lady Daventry. We are hoping that when the Hospice is built we can sponsor something in Noah's name. So to the fateful day- 5th July 2009. Noah had been quite restless the week leading up to him passing. It was so hot and he just didn't like it. The blinds were closed the fan was on and it was still 24C.

On the Sunday morning he was very unsettled and I said to Mo we needed to take him to hospital. We called the nurses who said get an ambulance, the first and only time we had ever called one. We took him to UHCW and because he had symptoms of swine flu they wanted him segregated. I was not happy but needed him to be sorted if he had, so we all had to gowned up and masked up, even Noah. They checked his SATS and they were about 75-76, which was not low for Noah but he was very unsettled. We fed him while we were waiting for the doctor, and once the doctor had seen him he said there was nothing majorly wrong that he could see so we took him home.

Noah shouted all the way home and had two major screams which worried me but I played Greatest Day by Take That and he calmed down a bit. We got home, Mo got Noah out and passed him to me, and I took him in the living room, and he went. I screamed for Mo, and then I called 999 but was totally hysterical so ran to my neighbours who came round. But Noah had gone. 

The Paramedics arrived and were working on him, but I told them to stop as his little heart could take no more. They just had to do their checks. So our little angel became an angel and his funeral was on the 7th July. It was a beautiful, part Islamic and part humanistic, with me speaking and telling Noah's life story. Noah had about 50-60 people at his funeral that showed how many people loved him.  He is buried just behind his brother Jacob and that gives us some peace knowing that they are now together. His school put on a beautiful memorial assembly where I read 'Waterbugs and Dragonflies' which was so special.

noah more pics

We are proud and honoured to have been given Noah. I know we could have done no more for him, and we know that Noah lived his life the way he wanted and passed the way he wanted. We could ask no more. He is still working by being involved with Zoe's Place and his face is on their car stickers which is wonderful, and also by doing Telling Stories about genetics which are used as tools to teach the medics. We also had lots of students who knew Noah and I know he has changed their minds about Edwards’. When we entered into the world of Edwards Syndrome we never knew what a legacy he would leave, but he has and now we are on a mission to celebrate our kids lives. We will always grieve for him, but we want his life to be an inspiration for others going through this, and to remember that Noah accomplished in 3.5 years more than most do in a lifetime. I would like to thank everyone involved in Noah's life from the bottom of our hearts for giving him the chance.

by Debbie, Mo Ali, Joshua, Thomas and Megan

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