Alfie was born on 23/07/2012. When I found out I was pregnant with my second child I was over the moon. A wee brother or sister for Emma. My happiness at being pregnant wasn’t to last and in fact at my first scan we realised that all wasn’t well. I was scanned and then told to wait in a consultation room. It was dim and the only clue I had was the looks on the scanners faces. I waited for what seemed to be an eternity for someone to come and explain what was wrong and at that point I really thought there was no baby! A consultant explained that baby was still there and a heart beating but they had found something. A sack of fluid on the back of the babies head which she went on to explain is usually the first sign of a chromosome fault so downs syndrome or Edwards for example and while some babies live thru pregnancy most do not and some are just not compatible with life. My heart sank. What I had thought of as a opportunity to see my baby growing inside of me and get a picture had been taken away from me and instead I had a load of decisions to make on the best way forward.
I decided that I was going to do all the tests I could even though some of them could potentially be fatal. I told myself that I was giving him the best chance and if something was to happen this early in pregnancy then it wasn’t to be. Each thing they tested for we survived and nothing showed up on any of the tests. We didn’t know what was wrong and we weren’t going to find out. Instead I continued to be scanned every fortnight and each time something else would show on scan.
Eventually we somehow got to 28 weeks and at this point I started to believe I might have a baby. Up until this point I honestly think no one thought our baby was going to survive. Things now changed from being negative every week to planning for his birth and also preparing his wee body by giving him steroids so if we needed him out early his lungs would be bigger and stronger. I continued to grow and at 30 weeks my bump was measuring at term. It was thought I could go at any time and the decision was made that I would have a section at 34 weeks. I now knew I was having a baby. I didn’t know much about him other than he was measuring between 2 and 4 weeks behind in the size of his limbs and his head was bigger than it should be. It seemed no one knew what was wrong with Alfie and I guess at this point I started to believe he was going to be fine and everyone was wrong. Section day came and I was excited. I don’t think the thought of anything being wrong really crossed my mind that day. I was having a baby today. I was excited. I think I honestly believed that I would have a section and then be whisked round to the ward with my new baby by my side. Of course it wasn’t like that.
Looking back I don’t really remember very much of what did happen. Alfie was taken away almost immediately and I never saw him. The surgeon said he peed all over her. Strange the things you do remember. He was taken to neo-natal intensive care and I was taken to recovery. The next 6 weeks he remained in intensive care until eventually getting discharged at around his proper due date. It was all respiratory related things that had kept him in and he was discharged on home oxygen. Whilst in hospital he had seen a geneticist and she was almost certain that he had noonan’s syndrome based on his features. We found out 3 months later that this was the case. Alfie was home and although he needed oxygen and was closely monitored he actually kept quite well. His first winter saw him admitted a few times but all in all he was well.
6 months later and Alfie was taken off oxygen and put on a non invasive ventilator overnight. He continued to grow and suprised everyone with the progress he made all be it he wasn’t really doing as much as a “normal” baby but he was progressing. Part of noonan’s syndrome means he is smaller than he should be. He has respiratory problems and also a heart problem but that has remained stable since birth.
1 and a half years on and Alfie is doing great. The decision is made to take him off his ventilator and get a date in place for him to have his tonsils and adenoids removed as they think it is them relaxing when he is sleeping that is causing his oxygen levels to dip. Alfie was thrieving. I wasn’t worried about him getting his tonsils out at all really although we knew he was going to Yorkhill as he had been under a respiratory consultant and cardiologist.
Lots of things happened within a year for everyone but my year has been crazy. Everyone who knows me will know that Alfie went for a routine operation a year ago in March to remove his tonsils and adenoids. Prior to this he was relatively well and there was and still is no clear reason why things went so wrong .
Alfie basically never really came round from the general anaesthetic and the events that followed were devastating. He was out on paralysis meds and we saw ventilator after ventilator fail to work for him. He had two chest drains in and stomach drains and yet his body was still swelling with all the drugs and fluids getting pumped in to his wee body. After 3 weeks of non improvement he was put on to total bypass “ecmo”. In between time he had numerous infections including phneumonia caused by being on ventilators.
The machine alone didn’t save his life but gave his body the total rest it needed and doctors decided as a last chance they would do an operation to see what was stopping his lungs from healing. At this point Alfie had arrested twice and given emergency drugs a third time. We had discussed what happens If things go wrong again. Do not resuss talks basically. I hadn’t seen my boy move or talk in 6 weeks, he was just laid there doing nothing swelling more and more each day. Each day something else was going on with him. He had this operation on his lung and it really was a turning point. They found a whole load of blood clots and when they removed them Alfie appeared to get better almost immediately. His lung started to inflate again and the decision was made to take him off ecmo. A doctor decided that he was going to stop all the antibiotics he was on and rather than get worse or stay the same his infection markers dropped and improvement continued so much so that drains were quickly removed and ventilation was dropped.
Within 3 weeks of being on total life support and 6 weeks of paralysis meds Alfie was getting discharged smile emoticon how he went from being on deaths door to getting discharged 3 weeks later we will never know just like I will never know what caused it all in the first instance. The only thing that showed the trauma he went thru was a bed sore on the back of his head and a few battle scars. Even the sore healed way quicker than expected.
We now have a happy, reasonably healthy little boy who for whatever reason has grew and developed so much more in the past year since that happened than he has since he was born. He has learned to walk and talk, plays games and sings. He is happy all the time. His sister Emma is amazing too and has dealt with everything so well. So when things are bad and you think there’s no hope remember wee Alfie’s story smile emoticon
This year sees us go to find out if anything that happened to him has had a lasting effect on him. We suspect his lungs are not great given the amount of times he has been in hospital over the winter but it’s Alfie so you never know! I’ve learned not to take anything for granted.
Despite everything that has happened to Alfie in the past year he has came on leaps and bounds. All the issues that he had after getting his tonsils and adenoids out have resolved and he has went on to suprise all of the professionals involved in his life. In a year we have went from barely sitting to learning to sit, sit to stand and now recently he has started walking. No-one can believe how much he has came on and question whether something was underlying before he got his tonsils out. The difference is incredible. We went from very much having a baby to having a toddler. We decided after Alfie was discharged from hospital that we would put him in to nursery for a few days a week. This allowed me some time to spend with my daughter and also gave Alfie time with other people as he would only ever go with me. At first it was really hard and he didn’t settle very well at all but we increased the days that he was there and he absolutely loves it now. He is in a baby room still despite being 2 years old but he’s not long walking so at the moment that is the safest place for him. Being at nursery has definately prepared him for going to a regular 3 to 5 nursery after the summer as I feel he would be able to settle in to it easier now he has got used to being in other people’s company. Nursery has also allowed the many professional’s to see him outside my home which again gives me some much needed time away from the endless visits we were having from physio, Occupational therapy and speech and language to name but a few.
We have been well since Alfie got his tonsils out and he really has went from strength to strength. The only issue we have is winter chest infections which have seen him admitted to hospital almost every month over the winter normally for about five days but despite this he is well and only ever needs a wee bit of o2. I guess for now it’s something we just need to accept.
Alfie will always be on the small side and only really at the developmental stage of a baby about a year and a half to two years old but he continues to suprise us with how much more he is doing on a almost daily basis. I’ve changed myself in how I see him and I try not to compare him to other 3 year olds. He’s just Alfie and I love him and his sister more that anything in the world.
People will always judge you. I know I’ve done alright by Alfie as we have a happy little boy smile 🙂