Health knowledge made personal
Join this community!
› Share page:
Go
Search posts:

"Bee"-ography Monday

Posted Jul 11 2011 10:18am
Meet Phillip! He is 16 years old  from Northern Ireland. His mom, Avril tells his story.




Because we had a son, Mark who was microcephaly we went for genetic counselling before we tried for another baby, the Professor of genetics we met told us 'Go ahead and have as many babies as you want. Marks problems are very rare and dont appear to be genetic'. To our delight a few months after this I was pregnant with Philip, at our 12 week scan everything looked normal, and his head size was right for 12 weeks, at 18 weeks scan we were told the same. The genetic doc told me he would scan me at 20 weeks, this was at a different hospital, and he was just doing it for my peace of mind. Unfortunately at this 20 wk scan they 'could not find a brain' - their words. As the weeks went by they said something was wrong but as head size was normal, they would not know for def what was wrong until the baby was born.

They induced me at 37 weeks, at my request because I was so worried. When Philip was born the Doctors congratulated me, because everything appeared normal with him and he scored 10 in the Agar test, we were delighted. But I did not want my husband to phone my parents to tell them until they scanned Philip, after the worry during my pregancy I wanted to be sure. Doc said, He is fine, he will be going back to ward with you his colour is great looks like there is no problems. But I coaxed her to scan him, so my husband went with him and the doctors while they were still working with me. About half an hour later they came back, though I knew by my husbands face, they said things were very bad. I needed to have the baby baptized immediately because he would not survive very long because he had no brain! They took him to special care baby unit and within 2 hours I was back home, all the memories of when Mark was born came back and I did not want to be in hospital listening to all the awful things.

  Next morning while I stayed at home with Mark and my 8 year old daughter my husband went up to hospital to speak to doctors and see Philip, who as all the medical staff said,  the most beautiful perfect looking baby, you would not think he had any problems. My husband rang me to contact my minister, and go to hospital so we could baptize Philip. I said to the doctor I was worried of seizures starting because Mark had bad seizures. But docs said he did not have a brain so he would not take seizures. They said he was not going to live long enough, 2 days to 2 weeks most. I asked if we could take him home because I needed to be with Mark 24 hours, and would be easier if I was at home with him, they said no he would be a 'hospital baby' and would not suck so they needed to tube feed him. They gave us a room were we could stay all day and bring family and friends. I could not understand why when I put my finger into Philips mouth he sucked, so after a few days of tube feeding I asked if I could try a bottle because he seemed to suck. Well, the nurse said he was my baby I could certainly try, but dont get to upset when he doesn't suck. Well from that day he sucked for all his feeds! Am I glad I tried!



After another couple of weeks I asked if I could please take him home because it was hard dealing with Mark and an active 8 year old in that room. After a meeting it was decided I could take him home during the day but bring him back at night. We done this for nearly 5 months. At three months they told me they expected his head to grow very quickly, at that stage it had not started but they wanted to put the shunt in while he was well, so we spent a week at hospital having that op done, by this stage he had started taking (having) seizures. 

Christmas eve night there was no way I was taking him back to hospital, so we lifted the phone off, and kept him beside us, we just looked at him most of the night in case anything happened, we left the phone of all over Christmas and my husband told me to put it back on we had not stole a baby he was ours so we had done nothing wrong. Few days later we got an appointment for him to see his doc, and she said she understood and they were not doing anythin for him as at things were going well but just take it a day at a time.

 We were very busy looking after Mark, and Philip and my daughter Naomi, but Philip loved his food, was gaining weight, and to our delight was similing, chuckling and following us if we were close to him, so all in our world seemed right! We obviously knew he was not progressing 'normally' but we had him he was happy most of the time, the seizures we were used to with Mark, so we just carried on. When Phillip was 11 months old,we found Mark dead in bed one dreadful saturday morning. When we rang to tell people they thought I meant Philip. The house was full of doctors, and police a real nightmare, they done a post mortem and discovered Mark had a tumor on the left hand side of his brain which 'switched' his brain off and nothing could have saved him. I knew he was not distressed when he died, because we had just sucked out his trachy and he smiled at me and fell asleep or so I thought, so I went into bed beside Philip and didnt realize til next morning.

 
I do not send Philip to school, I just keep him at home because every minute is so precious, and being selfish I cannot bear to be apart, we do not have respite care either, he is either on my knee or his Dads knee, he doesn't like to sit on his own bottom, he get agitated and red faced til we lift him, not sure but some people say he is spoilt! His smiles giggles our so precious because they told us he would never live long enough to smile, and didnt have the part of the brain that would let him show pleasure, boy are they wrong, he loves noisey toys, he loves people whistleing, and he loves classical music, Where does this come from, besides no one else in the family like calssical music. He loves when my husband tickles him with his beard, he loves the spa bath we got him, and even tho he cannot say it he really really loves us, his beautiful big brown eyes light up when we speak to him, he is everything to us. So far he has escaped all the chest problems that wee Mark suffered all his days. He Praise God keeps reasonably well, tho he did break his leg last year, they think it maybe happened during a seziure, and because he does not weight bear he now has brittle bones. Thankfully he came thru that operation very well and we were only 1 week in hospital. I wanted him home as soon as possilbe because swine flu was about at that time. His bowels no longer work, and at 16 years 10 months he has stopped responding to enenmas, so I have to clear his bowel manually every couple of days, his seizures can be dreadful, he has quite a lot every day. If unwell in any way, then he can have maybe 30 plus seizures per day. That is usually when we use rectal valium. He can be very agitated some days, and he does not have a sleep pattern. After all my years of lifting I have had to have a hysterectomy , so my husband has now had to leave work to help me look after him. So this is now a new phase in our life, but Philip defnitely makes all the heartache and worry worth everything, he is doing his best, so I think it is only right we do our best to help him.
Post a comment
Write a comment:

Related Searches