Ben and Daniels Story – by John & Sharon Harris

Ben was born at Gloucester Royal hospital by caesarean section on the 28/08/06 weighing just 1lb 14oz and 14 weeks early. He was one of a twin, but sadly his brother Daniel died, shortly after being born. This was just the beginning of our rollercoaster ride and five months living away from home.

On Friday 25th August 2006 at Cheltenham hospital I was told I was going into labour. Immediately I was given medication to stop the labour and steroid injections to mature the babies lungs just in case they were to be born. I was then transferred to the nearest hospital which was Gloucester royal hospital where they would have incubators for the twins.

Unfortunately I was only able to hold out until the Monday before my waters broke and was taken down to the labour ward. It became apparent that Daniel, the first twin was unable to be born naturally so I was taken into theatre for a caesarean section with John by my side. This was our worst nightmare, you just don’t think this could happen to you, its always someone else.

Daniel came first, and we were immediately told he was not going to make it, you just cannot imagine what it is like to be told one of your babies has died. Two minutes later Ben came out and let out a little cry, that was what we needed to hear.

Ben was taken to the SCBU (special care baby unit) there he spent the next 39 days in intensive care being ventilated as he developed RDS (respiratory distress syndrome) from being born too early, which caused him to have immature lungs, and could not breathe for himself. He also had numerous blood transfusions, I can still see the little marks the backs of his hands if you look closely where the lines went in, but hopefully with time they will disappear.

I remember going to see Ben later that day, lying there with all these wires and tubes connected to his tiny body, basically keeping him alive, thinking what had we done to deserve this. But when you look around you soon realise you are not the only ones who are going through this nightmare. Each day would be different, yesterday could have been a good day, today the doctors could be telling you they do not know if Ben is going to make it. This is what any parent is dealing with on a day to day basis when they have a child in intensive care. And between the both of us, you have to summon up the strength to get through that day.

On the 26th September 2006 Ben was taken to Bristol hospital to have a PDA ligation on his heart valve (corrective surgical procedure for children whose ductus arterious did not close after birth) where we spent the next five days before returning to Gloucester hospital.

After coming off the ventilator Ben then went onto continuous CPAP (continuous positive airway pressure) to keep the air sacs in his lungs open, he stayed on this for another 30 days.

Whilst Ben was in Gloucester, John and I lived in one of the Ronald MacDonald parents room where we stayed for 15 weeks, John would drive to Stratford each day to run Arrow Publishing, while I stayed around the hospital seeing Ben as much as possible.

On 2nd December 2006 Ben was transferred to Cheltenham hospital to SCBU where he was now on low flow oxygen. We then decided to rent a flat close to the hospital, again so we could be close to him. Whilst here Ben started receiving input with physiotherapy. Ben was discharged home on the 27th January 2007  and remained on low flow oxygen, this was scary bringing a baby home on oxygen, at least at hospital we had the back up, but after the initial nerves we all settled in well. Ben also came home with numerous amounts ofmedication, which were to be given at different times of the day and night, this in itself was a full time job. Ben came off oxygen for good on the 30th march, this was a big achievement, we celebrated with a bottle of champagne.

Ben had a lot of visits to hospital afterwards for check ups and we received a lot of home care from the health visitor, physic, speech and language for bens feeding and from IDS for bens development, every week we would have visits, we were certainly being looked after.

Ben has gone from strength to strength, he does though have speech, language and developmental delay, but these are all areas he is getting the support he needs. He also has a vocal cord paralysis, which could have resulted from prolonged ventilation, which means he’s left with a breathy voice, and still does not have a loud cry and no proper laugh, but hopefully in time this will right itself and this is a small price to pay considering what he went through. We both feel we are very lucky, he could have had more serious issues.

Ben is a happy loving little boy who loves life, he manages to charm everyone he meets, with his lovely cheeky smile and big blue eyes. He loves pre school and his speech is now improving.

This is just a brief outline of what Ben and ourselves went through. Ben has been a tough little boy to get through what he has and when I look back at the photos and videos I cannot believe how far he has come. We are extremely proud of him. But none of this would have been possible without all the help from the doctors and nurses, not only from the medical side of things, but also  the support we had from the nurses helping John and I through the most emotional rollercoaster ride we will have ever been on, they were always there ready to listen, and all the support from our family and friends without them I don’t think we would have got through it. If someone would have told us we were going to spend the next five months in hospital, I would have wondered how we were ever going to get through it, but the truth is, you do, because while Ben was fighting, we must too.

There are hundreds of parents right now going through exactly the same situation as we did, and for some of those, they will not be as fortunate as John and I to bring their baby home. That’s why bliss needs your help, however large or small. If everyone made a donation, it would make an enormous difference to the lives of many vulnerable babies and their families.

John and I would like to say a big thank you to Gloucester Royal Hospital and also to Cheltenham Hospital, to everyone who helped in looking after Ben and ourselves. We cannot thank you enough. We have donated £575 to the BLISS organization to show our appreciation, please, please donate and help others families like ours.

Here is John presenting a cheque to the BLISS representative

Miracles do happen!