Our first pregnancy we were so happy and excited, during our fist scan at 12 weeks being told all the measurements was great heartbeat was good but then we were told there was a mass and was taken to a little room just as you come into the department. I remember walking out of the scanning room a little girl seeing the first picture of her brother or sister, then looking at John starting to stand with a smile on his face as we were lead to a tiny bland room to wait to find out what mass and what that would mean. It felt like forever before we were lead up to fetal medicine to have another scan with the specialist where we were told there were multiple organs and bowel on the outside. We were then advised to seriously consider to abort before being sent away to return the following week for another scan and more discussions once we had time to process. It felt like the whole world had just shut off on us as we then left to consider if the child that I had always wanted had a chance to survive or not. 

As I mother I was very stubborn and wanted to give him the best chance so we then spent the next few months going backward and forwards to Addenbrookes weekly sometime up to 3 times a week, we could have driven there blindfolded. It was our new normal to drop everything as soon as they called to run along for more scans and tests. We had well over 30 scans, we all had genetics, which meant a needle inserted into the belly which had chances of miscarriage to get J.D’s. We had specialist from all over the UK coming to run tests and scans in which we also learnt he had a hole in his heart and duplicate chromosomes which could cause more issues. Even with all the tests and scans coming back with not so promising results I still felt I couldn’t let him go he was my strong boy and after 7 1/2 months of being ‘advised’ to abort, our specialist finally said ‘he may survive’ I still remember how much hope that gave us we wasn’t fighting alone believe our child would make it. After so many months of bad news after bad news being told to distance myself from the little baby growing in me kicking me and wriggling around there was a chance he would make it.

We were told it would have to be a Caesarean birth then 3 weeks before his due date I was told I could try natural but I would have to be induced and would have to have surgeons, specialists and a whole lot of medical staff which could equal up to 15 people with us in case he ruptured his congenital hernia on the way out, if he did it would be a race for his life. Luckily apart from seriously underrating how much my boy wanted out J.D came along a lot sooner and quicker then they ever expected so he joined us as all the surgeons and specialist came running in to check him over before rushing him off to NICU with rocky following after him. 

My first glimpse of my boy was a picture that rocky sent me after 7 hours I was finally able to be taken up to NICU to meet my boy where I was allowed to hold him for roughly 2 minutes before his temperature started to drop and he had to go back into his incubator, I then had to wait over two weeks before a got another hold. My gorgeous boy looked so big compared to all the other babies in his room but so vulnerable. He was taken in for his surgery at a day old and the next several hours was the worst of my life hoping that they would be able to insert all his organs and bowel back in in this one surgery and that the organs weren’t too damaged to be usable. After what seemed like forever our boy was back, my heart broke seeing him so wired up with massive breathing equipment on him you could barley see his face. The surgery went well considering, his spleen had been one of the organs on the outside which took the most damage. Georgina his surgeon informed us she had three choices for the spleen

1. Remove it and he would be on life long antibiotics and any cold or virus could wipe him out (think boy in a bubble)

2. Attach his spleen where it was supposed to be but this would likely end up with his body rejecting the spleen due to the stitches and

3. Just pop it in and leave it with the hope that it would give him some sort of immune system.

Rightly so she went with option 3 but that still has its risks meaning that his spleen could twist at any point and poison and kill him if not treated quickly enough. As a lot of you will know his immune system has been compromised and before he was even one years old he was on double digits of antibiotics and steroids along with multiple hospital stays and unfortunately multiple times where we nearly lost him. His first year he was in hospital or home confined for over 2/3 of his life.

As he has grown we have had numerous appointment scans blue lighted trips and several nights with him in hospital having to watch over to ensure he kept breathing. He has had inhalers since 3 months and has had physio from 6 months along with speech and language, hip X-rays and god knows how many appointments. We had to stay in for the year plus whilst covid was at its worst as we were advised if he gets it it’s likely he would struggle to survive it. 

All through the weeks at NICU the staff there was so amazing and supportive not only for J.D but also for us as parents. They helped me when I got mastitis they even had a little gift and card made for rocky for Father’s Day the whole staff there was incredible. We then spent another few weeks on ward before we were finally able to take our boy home 

Our journey with J.D will always be a struggle with his continued issues and appointments but we would t even have him if it wasn’t for all the specialist, surgeons, midwife’s, nurses even the cleaners everyone that supports the process of looking after these vulnerable babies and parents deserve so much. They were able to ensure our family started and because of this we’d like to honour them as much as we can. Every year we donate toys to the kids on wards and I learnt to knit so I could make the bonding squares which was for a long time the only thing I was able to give him. Therefore we would like to honour them again by asking anyone who would like to donate rather then giving us presents so another family like ours can either start or continue with the help of the amazing team at Addenbrookes NICU, Fetal Medicine and The Rosie. Anything you feel like giving I’m sure will make a difference so thank you and thank you for joining us on our special day 

Love The Hunters