Throughout pregnancy every mother looks forward to the moment they get to meet their baby. Whether its for the first time or the last time, all you wish for is a healthy baby. The thing is, not all babies are born healthy. We rarely stop to think about what it’s like for mothers when their babies aren’t born healthy and the impact it has not only on the baby but on the whole family too.
One brave Berkshire Mum, Jemma Davis has kindly shared her story about the birth of her Son James and his diagnosis of congenital Hyperinsulinism and the impact this has had on her life. Please read on and take a moment to reflect on how you might be able to help Jemma and other families like hers.
I for one, can’t imagine having to go home without my baby and I can’t imagine the turmoil of having to choose between your children in such a way.
My pregnancy with James was just like any other pregnancy, he is my second child, my first being a beautiful healthy daughter Amelia-Rose, now 17 months old. My bump grew very quickly and I was a lot bigger whilst carrying James, however my midwife didn’t seem concerned. Friends and family were adamant he was going to be a big boy but I just didn’t believe it.
I went into labour 2 weeks early on the morning of the 7th March 2014, that evening at 8:12pm our beautiful baby boy James was born, weighting a huge 11lb 8oz. A couple of hours went by and myself and Shaun were enjoying cuddles with our newborn son, everything was perfect. James guzzled a huge amount of milk down, more then an average baby would usually take, but we just put this down to his size.
Soon after his feed we noticed James had started to shake, almost like he was shivering. We thought he may be cold so wrapped him up in blankets but this didn’t help, we then noticed his hand had turned blue, this was when we. knew something was not right. A doctor rushed James away and told us some tests will need to be done, this was very upsetting for us we had no idea what was going on or what was happening to our boy. They moved us onto a ward to get some rest and told us we would be able to see James once they have done these test and things were settled.
Later that evening a doctor came back, James had been moved to the special care unit, they found out his blood glucose levels were dangerously low. To stabilize these they will need to put fluids into his body via his belly button. Once things were settled we were allowed to go up and see James. we weren’t quite expecting what we saw, James was attached to many wires and machines, this was heartbreaking for us, we were unable to cuddle or handle James due to these wires and the risk of them falling out, as his body was dependent on them, we just felt so helpless.
We were hoping his blood glucose levels would eventually stabilize, however this was not he case for James, 2 days later and there was still no improvement. On the 3rd day it was decided that James should be transferred to Great Ormond Street hospital in a London were they have a specialist team that deal with hyperglycemia (Low blood sugars).
We knew at this moment that things weren’t going to be easy, our whole family were worried for James . James was transported to the hospital via ambulance and we were going to be with him that evening.
Myself and Shaun were sent home and we decided it would be best for me to travel to London with my mum the next day while he stayed at home looking after our daughter. James was put on a ward which specializes in endocrine and metabolic patience, this was where tests were done and we found out James has a condition called congenital Hyperinsulinism. This is something we had never heard of before.
It’s a relatively rare condition but can be potentially serious if not managed. Hyperinsulinism is a condition where the pancreas is creating inappropriate and unregulated insulin secretion. So there is more insulin in the body then needed which causes blood glucose levels to dangerously drop. Symptoms of the condition can be shaking, floppies, sleepiness and sometimes feeding problems and it effects around 1 in 40,000-50,000 people. It is mostly picked up on from birth but not always. If blood glucose levels are not stabilize it can often cause seizures, lose of consciousness and potential brain damage.
This was a very scary time for us, how could our baby boy be so poorly he just looked perfectly healthy. James had to go under general anesthetic to have a Hickman line put in which was an alternative to the line into his belly button but more stable, so he would be getting the fluid he needs, we were then also able to finally give James a cuddle at 4 days old.
James needs hourly blood glucose checks which involves pricking his tiny heals on his feet for blood samples, his heals are now very bruised. James is constantly attached to a machine to receive his fluids so we are unable to take him out, he has the condition quite severe and also needs 2 other medications to keep his levels stable. Each day we would travel up to see James as a family, more tests where done and different medications where tried but unfortunately these did not work with James.
A few weeks went by and a we started to realize that’s James was going to be at a Great Ormond street hospital for quite a while and the time came where we just could not afford for all of us to travel any more. We later decided the best thing we could do was for one of us to travel while the other stays at home with Amelia-rose.
I was traveling nearly everyday to be with James and then back home to spend the evening with My daughter and Shaun. It was costing me over £100 a week something we could not really afford at the moment due to dad not being able to work as he was caring for Amelia-rose.
I feel so torn between both I want to be with both of them but it’s just not possible. It is horrible having to leave either one of them, I just feel a constant sense of guilt. Dad is constantly missing James but lets me go to see him because he knows how hard I am finding this, whenever we can, we try are best to go altogether as a family but at the moment it was just not financially possible.
We tried hard to get family accommodation with help from the hospital so we could all be together, but no where was available to have us. We managed to get a small grant for help with travel which covered a weeks worth, but after that we went back to struggling.
Bills were falling behind and we had to start cutting down on how often we could go and see James, it was killing us. He is our baby boy and we are missing out on so much, we would do anything to bring him home.
We travelled to the University of London College Hospital for a PET CT Scan and we found out his condition was focal which meant only part of his pancreas was bad and there is a chance he can be cured with surgery which involves removing the bad part. Its difficult procedure and would take a long time but the chance there was a cure was fantastic news to us! After spending 3 months of traveling back and forth to London everyday, money was running out, bills need paying and we were just all exhausted, and tired of worrying. To hear there was chance James could finally come home and be with his family was amazing news!
After 4 hours in surgery, we prayed for the best, things were looking good until that evening and James blood glucose levels continued to drop and we were back to were we started! This news was devastating, we were all so stressed and worried. How could we afford to keep traveling like this when dads not able to work, we thought about differnent options, maybe I take Amelia-Rose to the hospital with me? And then dad is able to work.
We tried this for a couple of days but it was just to hard, I was exhausted and it just wasn’t fair on Amelia. We just didn’t know what to do anymore. The hospital told us there is a chance some of the lesion may have been left in, even the smallest part can cause the same effects on his glucose levels. That was when they told us James would have to wait another 2 weeks for a second PET scan and then possibly more surgery, it was so upsetting to hear.
Despite everything James has been through he still smiles through it all, he is such a brave boy and we could not be more proud of him and of our Daughter for how good she has been through this difficult time. After realizing James was not going to be coming home anytime soon, we started to panic, we needed help, we couldn’t just leave our boy alone, we need to be with him as well as our daughter. We turned to other family members for help and they were brilliant and helped as much as possible whether it was towards travel cost or going up to visit James themselves so i could have a day a home for some rest, and time with my daughter and Shaun.
After asking family for help and exhausting all other options we just didn’t no what to do anymore, so I turned to a group on Facebook called Wokingham gossip girls, I posted about James condition and about our financial struggles and worries and ask members of the group for advice that had been in a similar situation before. I was amazed by the response of the group everyone was so lovely, offered lots of advice on possible accommodation, charity’s that may be able and just kind words. Unfortunately we had no success with accommodation and had already exhausted every other option, but what happened next we were not expecting at all.
People started posting with kind words and saying they would like to donate to us to help us be with James, we couldn’t believe it, did these people really want to help us? We where absolutely overwhelmed by everyone’s response. They suggested we started a fund raising page so anyone that wanted to help could. We took there advice and set up a just giving page for James and posted it in the group, it all happened very quickly from there. Several people started donating to help us be with our boy, before we knew it we had over £1000! This is enough for us to travel as a family for a whole month! That’s a months worth of stress and worry taken away from us just knowing we can be with our boy! With nothing getting in the way.
We couldn’t be anymore grateful then we are now and the generosity and kindness of everyone really has touched us. James still has a long way to go, but we know he is in the best place. We are currently waiting on the results from his second scan, and then we will know the next stages of his treatment. We are still hoping James has a chance to be cured and can only wish for the best. Knowing that we have the money to be with our boy for a whole month truly takes so much worry away from us. We are trying to help spread awareness about James condition as it is so rare, we were lucky his was pick up from birth but others have not been so lucky. We are extremely thankful to anyone that has helped and donated to us so we can spend more time with our son. We hope to have our boy home soon and cant wait for that day, it has now been nearly 4 months but feels like 4 years.
Any money left over we would like to donate towards the Hyperinsulism fund so more research can be done to find different medications and treatments to help other babies suffering from this condition.