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Tae Beau Bentham – Born 5th July 2012

With Tae I was armed with all the knowledge learned from my daughter Tia, I was given 3D scans with a consultant on a regular basis to look for signs of PRS. At the 12 week scan I took one look at his face and knew. The consultant wasn’t sure and asked if I wanted to go ahead with the pregnancy if the baby was to have PRS. I was a little shocked and hurt by this comment, I know she was just doing her job but my daughter was so perfect it felt like she was saying she wasn’t. As I had no doubt about keeping him I wasn’t referred to London to have thorough testing. I continued to see her and she remained unsure until about six weeks before his due date, when she said it did look like he also had micrognathia but they wouldn’t know about the palate until after he was born.

I was prepared, after all I had never fed a baby with an ordinary bottle and didn’t know any different. Tae’s labour was very different from his sisters. My waters did not break and I was having contractions for a couple of days. I went into hospital on his due date as they were very strong but they stopped and I was sent home. After very little sleep on the 5th of July 2012 I went into hospital again in agony, they told me I was only 2cm and to try going for a walk, within minutes the contractions became a lot stronger. I went back an hour later and was relieved to be 5cm. I again opted for an epidural but it didn’t work. The rest is quite a blur again the heart rate kept decelerating and I constantly felt people’s hands inside me trying to take blood from him or attach clips to his head. I became very tired and they decided he was deflexed. I was told to sign a consent form for a c-section and would need to be put to sleep as they needed to get him out ASAP. I don’t know how I managed to sign that consent form the signature was nothing like mine lol.

When I finally recovered I asked if how much he weighed and if he had a cleft palate. I was told he was 8lb 6oz and had no cleft palate but he did have a small chin and was in SCBU. I was taken on my bed to go and see him, the nurses explained he had very small airways and they were having difficulties intubating him. I couldn’t see him very well from my bed all drugged up and was taken away very quickly so the doctors and nurses could do their job. I wasn’t expecting this, my daughter had never needed an NPA. By this time it was nearly midnight and I went to bed, I was awoken shortly by a nurse explaining they needed to transfer him to Brighton hospital. I was very confused and upset. The lovely nurse went away and took some photos of Tae for me to keep. At 5am they brought him in his incubator to say goodbye to me. It wasn’t until nearly 12 hours later that we would be reunited.

I hated it in Brighton and felt so alone, my family couldn’t visit often and the nurses wouldn’t even let me touch him and tried to make me leave after half an hour of sitting with him. I kept asking about his palate and was finally he did have a cleft, in fact it was the biggest cleft they had ever seen. After 4 long days we were transferred back to my local hospital much to my relief. Here I was able to give his NG feeds, change him and most importantly of all… cuddle him. Tae was allowed home after 3 weeks of hospital stay in total. This time we came home with suction machines, a sats monitor and had to be shown how to make NPA’s. (I’m terrible at sewing and wasn’t amused by haha. )

From the day Tia fist met her little brother she has been fiercely defensive of him always looking out for him and never once asked why he had tubes, she told the nurses off for hurting him doing his heel prick and is always there for him, it is so cute.

Tae again had refulx and was in hospital a number of times for colds and chest problems. On a couple of occasions his vomiting got so severe he dropped 2 centiles each time on the weight chart. He was recently diagnosed with an intolerance to cows milk which is a relief as his operation has been cancelled twice due to chest infections caused by the vomiting and reflux.

At just under 5 months old the NPA came out and he managed marvellously without it. He is still NG fed but I think that has a lot to do with his milk intolerance which has only just been diagnosed. He eats everything I put in front of him he just won’t drink milk.  With Tae I have always put the NG tube in myself as well as the NPA as I’m far more experienced with it all now, as he only needs it for his nightly milk feed I leave it out and pass it down each night.

At 8 months old Tae said mama I couldn’t believe it, I didn’t think he would be able to say anything till after his op. He can now make gagaga and lylyly sounds even with his cleft. I am so proud of him. He will be one next week and can sit, crawl walk holding onto furniture and got his 1st pair of hearing aids yesterday. He so clever and good at communicating what he wants. I remember when my daughter was born the doctor told me his brother had PRS and he was extremely intelligent, he told me she would be too, now I see it in Tae too.

Both Tia and Tae are marvelous children, with Tae I had the fore knowledge that everything would be ok, even in my darkest days I knew it was going to get better, because I have been there before. I bring them up alone and its not always easy but it IS always rewarding. Tae is now waiting on a heart scan as a heart murmur was detected at a routine pediatric check up. He won’t be able to have his cleft repair until they know if the murmur is normal or not but he is doing very well even without it. I am so proud of both my perfect little angels, they are my gifts from God and I wouldn’t change them for the world.