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Beth is our first child and is now a fun, busy 3 and a half year old who rarely stops talking(something i thought she may never do). We've had quite a journey!
I had a normal pregnancy and no history of cleft palate in the family so it came as a big shock post delivery to see a big hole instead of a palate, when trying to work out why she wouldn't breast feed. As a GP I had some idea of the implications but the reality was a little different to put it mildly. I did feel somewhat robbed of the joy of having a baby as the focus was mainly on the cleft palate and how to feed. We had a succession of medical visitors and were kept in for 4 days while I gained confidence. It is a mixed blessing being in the trade and at the end of the day we just wanted to be treated like parents. Our saviour was Jane, her specialist nurse who held our hand throughout the traumatic process and I remember her saying that one day I wouldn't need her. I couldn't believe that at the time, as we were having two visits a week or telephone calls but I promise you it does get better.

Feeding was tedious and frustrating, it generally took at least 45mins to squeeze 110 mls in and I expressed too. I felt as though I was on a constant round of feeding, washing and expressing with little time to myself or sleep, which you are supposed to do with a new born. I was also in a constant state of anxiety as Beth's weight began to falter and she had bad colic. Fortunately my husband was more rational than me!

We had our first meeting with the specialist team at around 3 weeks, it was daunting with that many people in the room but at the same time great knowing so many people cared. I feel very lucky that we lived so close to a specialist unit. It was at that time that I heard about Pierre Robin Sequence. I had my own predjudices with regards to the label of syndromes and didn't dare look on the internet as it frightened me too much except for the CLAPA website. Unfortunately at that time it didn't have much on Pierre Robin Sequence hence me writing this now.

We were warned that she may have breathing difficulties and if they were going to happen they would have started to happen by 6 weeks so we breathed a sigh of relief when that milestone passed. A couple of days later when bathing her we realised all wasn't well, her breathing was very laboured. We rang the on-call nurse the following day who told us to feed her on her side which helped. It was challenging to feed her on her side and made going out somewhat difficult. I did feel isolated at that time as few mothers could understand my worries and we had problems with her weight due to high calorie demands which was solved by high calorie milk.

By about 4 months things had started to improve and we slowly stopped feeding her on her side and by 5 months had our first week away to Dorset.   At 6 months I had to return to work part-time but 3 weeks prior to this I had spent time training the nursery nurses on how to feed and am still greatful for their care and help.

Weaning was interesting as purees came out her nose and we occasionally got odd looks. She was never bothered by this and again it seemed to take a little longer for her to get established than most.

During this time we were also monitored by ENT as she had 'glue ear' and they wondered about hearing aids. At nearly 11 months she had her operation. I am going to be honest and say it was the worst day of my life. I thought it was bad when we left her going into the operating theatre but it was more awful seeing her post op, even though we knew the surgeon, Mr Goodacre had done a fantastic job especially with such a large cleft. She failed her extubation and had various wires and monitors attached. She then spent the next 2 days in ITU and didn't eat or drink till Day 4. By Day 6 we were allowed home. Getting her to eat and drink again was a challenge. We had about 3 weeks of screaming with each meal, not pleasant for any of us. But by her 1st birthday she tucked into her first sausage and hasn't looked back!

Unfortunately 2 weeks after the op she developed a cough and one of the stitches popped so she developed a fistula -a well known complication. I was gutted as I was desperate for her not to have another operation. By 16 months, we managed to get her onto a beaker and her hearing had started to improve. We then had an input from the speech therapists who gave us exercises to do.
Beth's speech has been much better than we ever expected so much so that they were not keen to operate on the fistula nor does she need grommets. So these days we have little input from the team as it is no longer required and she can be treated like another little girl. Which is all you want.

We now have another girl of 6 months, we worried it may have reacurred so we did a 3D ultrasound to look at the jaw at 15 weeks and a fetal MRI at 34 weeks which helped to reassure us.

I think we have been so lucky in having her. It has taught me a lot and made me eternally grateful to all those family, friends and medical staff that have been there for us. I wanted to write this to show that not all Pierre Robin Sequence is at the severe end of the spectrum and there are happy endings!

Tamsin Hawkins