Edward George McMahon
Born: March 18th. 2002
Place: Scotland
Edward was much longed for baby. We knew he was a boy as Ruth - my daughter, had been told this after several scans. He was our first grandson after two girls and Ruth & Steve's second child. Their daughter Olivia was three last December and is a very active and bright child. Nothing was picked up on the scans and we had no reason to suspect anything was wrong.
When Edward was born on the 18th. March at St. John's Hospital, Livingston, he was four weeks and six days early, and he weighed in at 7lb.10oz. He was immediately taken away after birth and put into an incubator as he had severe breathing problems. In the next few days, Ruth had a constant stream of doctors coming to tell her about something else that was wrong with her baby. He had a cleft palate, malformed ears, wide set eyes, an abnormally wide forehead and a flat nose - but none of them could offer a reason for the defects. The doctors were all puzzled and decided to list the symptoms on an internet site. At the end of Edward's first week, they had found a name for the syndrome - Pallister-Killian, but were unable to confirm this until they had sent a skin culture to the laboratory for testing. The results came back positive. Although we now had a name for his syndrome, we were still very much in the dark, as no one here had ever heard of it.
Edward was transferred to the Sick Children's Hospital in Edinburgh when he was eight days old. Again, the doctors were totally unaware of the syndrome, and he became a little guinea pig as they all wanted to see him and find out more about his problems. Ruth watched carefully as the nurses cared for him and by the end of April, she became sure that she could cope if he was allowed home. She had moved home during the first week in hospital, and had to travel in to the city daily with Olivia on public transport. After some persuasion, Edward was discharged on the 2nd. May, and so began the arduous task of looking after him.
Ruth gets almost no sleep as his apnea monitor constantly alarms, and he regularly needs oxygen. The weight of the oxygen cylinder broke the chassis of the pram and a larger, sturdier type of pram had to be bought. The support services in Bo'ness where the family live are excellent. She has visits from health visitors and doctors who look in without being called out. The local hospital at Falkirk has now offered regular respite care, when Edward will be taken in for either one or two nights at a time, so that the rest of the family can have some undisturbed sleep. There are frequent visits to various hospitals and clinics, but at the moment, Edward is doing quite well. He is steadily gaining weight, although Ruth is still giving him only her milk. There seems to be a question over when he will be able to tolerate solid foods because of the cleft palate.
It is far too early to say what he will ever be able to do. We have been told that his percentage of damaged cells is 90 so it looks as though he will be severely handicapped. However, he is greatly loved, and we are taking each day at a time. Perhaps one day soon he will smile, and that will be a real milestone. I will update his story in a few months time.
On this last day of 2002, I can now look back and see so many improvements in Edward's life. He has already achieved so much more than we ever dared to hope for. He can move all his limbs freely and he frequently lifts his head up quite a way when he is in his pram or cot. He has been fitted with two little hearing aids which have helped him to react to speech and noise, and for Christmas he was given three lamps which all have different coloured light functions and he happily stares at them for long periods of time.
The local health board had a high chair made especially for him which supports him at his head, back, waist, legs and feet, and this makes feeding him a much easier task. He still gets fed liquids by tube, but he eats solid foods by spoon with obvious enjoyment. So far, he has shown no signs of trying to sit up, but we hope that will come in time. He seems to be starting to teethe as he is dribbling a lot and there are two white marks now showing on his gum. He seemed to enjoy being with all the family on Christmas day and behaved very well - even posing for a photograph. His first nine months have been eventful, but he seems to have settled into a daily routine and has proved to be quite an easy baby to deal with.
Every few weeks he has a couple of nights in the local hospital so that Ruth can have some respite, and he has been for two stays at the children's hospice which also gives her a break. I am accompanying Ruth to the hospice next week so that I can see what they do for him there. Ruth has been amazing in the way she has cared for him as well as having the trauma of a marriage break up and an active little daughter to look after as well. We can only hope and pray that this new year about to begin will bring many more milestones in his life and most of all, that Edward will be happy and content.
Doreen Baxter
After a long hard fight, Edward died peacefully in hospital on May 16, 2006, surrounded with love and lots of cuddles. He is now whole, happy and with his Heavenly Father, and we can only praise God for that.
