Mantra

Within two hours of leaving Birmingham Women's Hospital I had received a call from the Cleft Team at Birmingham Children's Hospital (BCH) and an appointment was made for our local Cleft Nurse to visit us at home in two days time.

The first thing the Nurse, Jane*, said when she sat down was this, and I want this to be a mantra to all cleft families out there.

"This is not your fault. This happened probably before you found out you were pregnant. This is nothing to do with anything you have done. It wasn't because you forgot to take your vitamins, or a cheeky drink at Christmas. Nothing you have done has caused this. It has just happened, and we are here to help you."

I would urge anyone affected by a Cleft lip and/or palate to have that stored somewhere. Keep it on your phone. Frame it. Hell, tattoo it on your eyelids. Just remember it. There are times when you will still blame yourself. Of course you do. As a parent you are 50% of the child's DNA. Half of him is you and all of you is in him. As a mother, you are given the responsibility of carrying this cluster of cells and protecting them.... and frankly you feel like you have fucked it up. There are times when you have to blame something or someone, but deep in your mind and in your heart remember that you DID NOT CAUSE THIS.

Jane was brilliant. She explained who she was and her role, as well as all of the people at BCH who dealt with clefts. She talked us through what would happen once the baby was here, from labour and birth through to future operations. She answered all of our questions (including my stupid ones) clearly and kindly and showed us lots of photographs of children who had been treated by the team. She gave us the details of a wonderful company in Shrewsbury who offer free 4d scans to families with a cleft diagnosis (more on that in a future post) and was generally just lovely and reassuring. Finally she introduced us to CLAPA, and the mine of information and network of support that they offer.

We had a long talk about feeding; the options and the possible problems. We were told not to worry about feeding, that was her job and she would be there to support us. We were given two special bottles to take to the hospital with us, and we would be given more when she visited me in hospital after the baby was born.

When she left we all felt a lot more informed and reassured to know that the support was there. For the first time we had a glimmer of 'it will be ok' that has stayed with us for the most part, although wont pretend we have always felt it. What we did know was that it was the end of the beginning, and we just had to keep putting one foot in front of the other to get where we needed to be. Wherever the hell that was.

__________________________________________________________________________
*If you're reading this and your name isn't Jane, please accept my humble apologies. In my defence i hadn't slept properly in a week, managed to get tonsillitis since visiting BWH and have had severe baby brain in the intervening 16 weeks!