Down's Heart Group

Where to Start?

Ok So I figure before i go into Much detail about my Son, Maybe The overall Story Would be a good place to start so here it is!

Jamie Robert Alexander, from Aviemore, born Tuesday October 5 2010, sadly passed away Sunday December 26 2010.

Due to several Congenital defects including :

Hypo plastic right heart syndrome (hrhs)

Complete AVSD ( Atrioventricular Septal Defect plus a common valve, the worse docs had seen in years )

HIrshprungs disease

Pulmonary vascular disease

Unexplained Hyperthermia

All as a result of Down syndrome

We took 2 whole years to conceive our wee boy. And were over the moon when I got a BFP, the first scan went well despite being ill with hyperemesis However when we went to the 20 week detailing scan the lady went silent, my husband asked what was wrong and she explained the middle wall of our sons heart had not formed.... The consultants took us to a room at the side of their department and gave us the low down on what this meant. I was offered a amniocentesis due to this heart defect being common in baby's with down syndrome, me and my partner did not even need to think about it, the answer was no, We were not risking a miscarriage to find out our son had down Syndrome, we would love him un conditionally no matter what.

I had lots and lots of check-ups and scans after this and was told I could not give birth in my chosen hospital, it would have to be Glasgow’s southern general as they were trained in cardiac patients.

I delivered in a hospital 3 and half hours away from my home in Aviemore due to the best children’s hospital in Scotland being near this other one. I gave birth after only 12hours of an induced labour and got to see my boy briefly, he looked perfect but needed a wee bit of oxygen as he didn’t breathe well at first.

He was whisked of to the NICU and tested further for Down syndrome and his heart defects, They confirmed Jamie had downs which really did not bother us atoll we had already prepared for that result...... however during a routine heart scan they realised the defects were worse than originally thought and they would not be able to even attempt a repair as his heart was the wrong shape and size and he had Just 1 common valve, they also by chance noticed a blockage in his bowel and straight away he was transferred to the children’s hospital a 15 minute drive away, I could not go as I was still an inpatient at the hospital but nurses developed some photos for me that kept me going over night and I was able to phone Jamie’s ward for updates. Gary went along and that’s when nurses told him he had HIrshprungs disease ( The nerves in his bowel didn’t work so he couldn’t poo ) he had his first big operation when he was about 6 weeks old to get a Stoma, he did amazingly and only needed ventilated for 3 days and had fully recovered after a week........

Jamie was tired easily so he had to be NG tube fed, and me and my husband learned how to do this, even how to change the NG tube every few days. It was great feeling like we were useful and doing something for our boy.

when Jamie was about 5 weeks old doctors told us Jamie had developed pulmonary vascular disease due to his heart being left as it was, They told us that in the short run it would ease Jamie’s heart failure symptoms due to less blood going to the lungs so he would be able to breathe easier and eat better but doctors warned that because of this he would only live until his mid-teens latest as eventually the PVdisease would close of his lungs and suffocate him.

However Jamie found it hard to control his temperature and was always needing paracetamol, he was tested for everything under the sun But they could not find the cause, Jamie slept a lot so they decided to do a mri scan but the cheeky boy woke up and would not stay still so it did not work, On the morning of the 17th doctors and consultants came in to speak to me and explained they were so happy Jamie was doing so well and he hadn’t had a temp in like 48 hours so they were hoping he would be home within a week. Me and my partner went to a local reseraunt for the first time and were able to relax with the good news but that very night we went back to the hospital and we couldn’t get into Jamie’s room because of all the nurses, doctors and consultants..... Jamie had spiked a temp of over 42 degrees and was about 10 minutes away from cardiac arrest, after placing a DNR (do not resuscitate) On Jamie we knew that, that would mean he would die

However a brilliant specialist decided to try morphine which within about 5 minutes his heart rate had stabilised and he was breathing a lot better we thought he had been SAVED!

However the next day the doctors explained that because Jamie had such a high temperature for so long, His heart began prioritising were the blood was pumped so it was his lungs and brain. His other organs were starved of oxygenated blood for too long and had begun to shut down, first his stomach then liver and kidneys.

It was that night we were told Jamie had a month to live maximum, our whole world shattered in a million piece's, nurses helped us get an emergency marriage licence for the hospital and we got married on the 23rd December...... it was the best day ever.

Jamie even hung on in there for Christmas day and got to meet Santa, I was so happy however that night his breathing slowed down because all of his water retention was putting a load of pressure on his lungs and the nurses gave us the devastating urge not to leave that night, we knew straight away they didn’t think he would make it through the night, so I quickly called my mum and Husbands mum and they agreed to come down, In the early afternoon my family and gays arrived. Jamie was stable so decided to go for a quick shower, our Ronald MacDonald charity house was only 2 seconds away. However before I even got there I got a phone call from my husband urging me to rush back. As My mum, little sister, auntie and I entered the room my heart sank, two nurses were by his bed side Bagging Jamie in order to keep him breathing until I arrived. It’s the hardest thing I have ever gone through as nurses passed my sons fragile wee body to me and he took his last breath by himself. Doctors checked his heart beat and it was no longer there.

We were allowed to bath him and dress him, and spend all the time we wanted with him, including taking Jamie’s hand and feet prints. We even took Jamie home with us to Aviemore that night and I placed his gorgeous body in his Moses basket that should have been his bed. We had always promised him he would come home one day and we were not going to break that. That night I got to sit on my sofa hugging my son while I watched some TV, It was all so surreal and the undertaker came a took Jamie the next afternoon :(

He had a small graveside funeral for only close family and friends and one of his nurses from yorkhill even came along. It was lovely but heart-breaking as I lowered him into his forever bed.

My whole life is now incomplete and will never be whole again

I’m just glad Jamie no longer has to suffer in a body beyond repair xxxxx


12 Replies

Something that no parent should have to face, but sadly a reality for some members of our community.

My own close involvement with Down's Heart Group and the DS community as a whole came about as the result of a journey that ended with the same outcome and over the past 20+ years I've sadly spoken with many families facing this difficult loss. The only positive thing I can say, is that thankfully with advances in surgery and treatment and changes in attitude towards our youngsters, I have seen those numbers decline over the years - it's little comfort to those facing a loss, but I am heartened that that number is now less.

If I could save any other parent from this devastating loss, I would, but sadly all anyone can do is to be there to offer support and a shoulder to cry on and to tell you it well get easier to bear as the years pass, but it will never go completely and in some ways that will become a comfort for it means you have not forgotten.


Dear Penny,

I feel for Jamie's mum, having lost my own boy after 12 hours, from cerebral haemorrhage, but unlike my daughter Rosie, Sam did not have downs syndrome, but losing a baby is the same, whatever their condition, and cause of passing, so, my heart goes out to yourself and to Jamie's mum, and after 32 years ,i still mourn his passing and still remember his birthday and his birth. Thank you for all that you have done for those in our community, and for allowing there to be a place for these memories to live. In my day I was not allowed to grieve it seems, in fact two weeks after his passing, the Army Padre ( i was living in Army accommodation at the time) came to see me and started talking to me about being a "bright girl" and whether I had considered my future... work, education... talk about callous.. and he was a Man of the cloth... but that was then.. but, some things and some pain, you never forget. I hope that Jamie's mum has had kinder care than I had! She is very brave to share her experiences and talk about her wee boy so openly.


I'm sorry you also experienced an awful devastating loss like penny and myself :( xxxx


Dear Jamie's mum, thank you for leaving your story. I am so sorry for your loss and only hope that sharing it with us has helped you a little bit. Jamie was lucky to have you in his short life.


Sharing Jamie always helps me, I want everyone to know he was here xxxx


i was so very sad to read your story, i could of very easily of been you, but fortunately i still have my little boy, if you ever need to talk please do not hesistate to contact me my heart felt sympathy to you, i can not belive you managed to write all this down on the computer god bless you


Thankyou for your message :) xxx


I shared you story with my husband and my 3 of my 4 children and we are all so sorry for your loss. Sometimes its easy to forget just how lucky we all are to have our daughter / sibling still with us. We perhaps take the fact that she survived her surgery and has remained healthy for granted. You reminded us all that we are extremely blessed. X


Most people take things for granted its just how it works :( I'm so glad your daughter is healthy. It makes me smile every time I see a happy healthy child espeshailly when they have DS xxx


Thank you for sharing your story. It made me cry, yet gave me strength. My suprise downs boy is 5 months old now and will be loved passionately as long as he is with us. Thank you. xx


MumtoDSJamie- what can people say such a loss to you , and all your family. Our daughter was born with DS and AVSD she did live but had some brain damage after. she had infentile spasms and ten years ago leukimia she again had further brain damage. We had our child after IVF she is now happy and healthy but it has delayed her progress. It sounds like you had wonderful support from your hospital. You and your husband stay strong , we had to be strong to get over all her illness's xxxxx


I joined this community after reading about Jamie... MumtoDsJamie you are very strong and I can understand how tough it is to loose your baby in front of us :( ... But trust me our babies are in better world with no pains and problems... My Prayers to lil Jamie