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 )
Pulmonary vascular disease
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