Hi, my name is Gemma. I have 3 gorgeous boys called Owen , Jamie and Bradley. Primarily I will be using this blog to document Bradleys developments. He has a very rare genetic disorder called chromosome 3p deletion. I'm hoping it will help someone. I haven't been able to find much information on this disorder since he was diagnosed 3 months ago, and at the time of starting this blog, currently awaiting an appointment with a geneticist.
Firstly, my name is Gemma, I'm 27 and have 3 sons with my partner of 9 years, Paul. I had Owen 2 weeks before my 21st birthday. Owen was born 12 days after his due date, on the 2nd of March 2006 at 12:30am. He weighed 7lb 10oz and was bright red and crispy from being overdue. Phil Collins was playing on the radio when i was giving my last pushes, 'you're no son of mine' hehe. We didn't realise until we watched the video back. He is 6 now, very kind-hearted, well mannerd and bright.
Jamie was born on the 3rd March 2010 at 3:50pm. yep, they have a birthday 1 day apart, not sure how i managed that. Jamie weighed 7lb 14oz and was kind of purple , not too crispy as only 7 days late this time. He is a very cheeky chappy, very bright ,but does not shut up. I love it really. :o)
Now Bradley. My pregnancy was absolutely fine. I'd planned a home birth , because I found the care i had after Jamie was very poor. Bradley was due on the 6th May 2012. On the 4th May my waters broke, but nothing happened after. no contractions, not even any little twinges so I knew something was wrong. We arrived at the hospital at 12am and was examined to check my waters. Yep, they had definately broken. The nurses hooked me up to a monitor, same as you have in labour, to monitor Bradley. They kept coming in with worried faces , but wouldn't tell Paul or me anything . After a few hours, the machine kept switching off, i rang the alarm , and the nurse told us 'the doctor isn't happy with this at all'. We were told I was having very mild contractions,and the machine was losing signal, because Bradley was either squeezing the umbilical cord, or the umbilical cord was around his neck.
We were taken down to the delivery suite at 10am 5th May and I was hooked to a hormone drip to induce the labour. They noticed if I laid on my left side the oxygen levels weren't dropping quite as much, so that's how I stayed until I was ready to push. The next few hours were horrific. I was begging for a caesarean to get him out safely. At 5pm on the 5th May I gave birth to Bradley 6lb 4oz. They quickly cut the cord from around his neck, and rushed him off telling me he had swallowed the meconium . He had pooed inside me, due to the distress of the labour. Paul arrived back with a nurse and Bradley about 15 minutes later. Pauls eyes were red , he had obviously been crying. He later told me we had lost Bradley, it took almost 8 minutes to revive him. I know in my heart, if I had that home birth, Bradley would not be here now. I can't imiagine what Paul went through as he stood and watched our son being saved. It broke my heart just hearing it. We were kept in for 3 days more to make sure Bradley didn't have an infection from swallowing the meconium. Thankfully, he was clear. We arrived home on the 9th and Owen and Jamie were besotted. I knew Owen would be a caring big brother, but was worried Jamie may be a little jealous. I needn't have worried, he is fab with his baby brother.
When Bradley was 4 weeks old, it was obvious there was something wrong with his weight. He just wasn't putting anything on. I couldn't breast feed him as he couldn't latch on , and he struggled to latch on to a bottle teat, milk dribbling both sides if his mouth. We were admitted to hospital, where we had to stay for 3 days, taking temperatures every 3 hours waking him up , making him grizzly. Then after the 3rd day, we were allowed to leave, telling me I wasn't feeding him properly. That hurt! What an insult, even to a first time mum, let alone a mother with 2 older , healthy chidren.
Four weeks later when Bradley was 8 weeks old, we were admitted back in, his weight not even on the centile chart. This time we stayed a week. Bradley had numerous blood tests, testing for Downs syndrome and other things. They told me he had an under-active thyroid. Then we were sent home with medicine and a high calorie milk called infatrini.
At 12 weeks we were at Bradleys review. He still wasn't gaining weight. They said they had results from genetics to say he has chromosome 3pdeletion, but couldn;t telll me anything about it, except that it was rare. They also heard a heart murmur. We were in for another week. this week was full of more blood tests, an ECG, an ECHO, a brain scan, visits from a dietician, physiotherapist, a speech and language therapist for his feeding.He also had an NG feeding tube to see if his weight would increase if put straight into the stomach. I tried googling 3p deletion, the doctors didn't even tell me if it was related to his weight or if it was a whole new problem.
2 weeks later we wnt for a video-fluroscopy. A live x-ray to see if Bradley was safe with his feeding. He was dribbling much less and was discjarged from speech and l;anguage with a safe swallow. I took his feeding tube out. He was so uncomfortable and it wasn't making much diffrence.
So , here we are, awaiting our geneticist appointment. If anyone out there is in the same situation, I hope this helps , as you are not alone, or if you would just like to follow Bradleys progress then I will try and update as often as I can. I will try and work out how to put pictures on , to show how Bradley is doing , and to show his growth chart.
Will update after 12th November. The long awaited appointment with the Geneticist.
Gemma :o)
