My son had a baby with anencephaly

Today I will try to tell you about Sinead's journey.

At 22 weeks pregnant Sarah and Kevin were told about their unborn child having anencephaly which was bad news. They never questioned God about why this was, the fact is that the baby was planned & loved from conception and so they set about accepting that she was different and was not meant for this world. A task they undertook with support of family, friends, a whole lot of prayer, and amazing courage.

We as grandparents were able to feel her kicks in mum's tummy and treasure them, we spoke to her in the womb via mum's tummy also.

Sarah's labour was long but she made no complaint. Then on14th August 2007, she had her baby girl Sinead, who was not expected to live but survived 36 hours.

When she was 12 hours old we had the privilege of meeting her, we had chosen not to invade Kevin and Sarah's newborn time with her as it was so precious. Kevin phoned us to come and visit with the other granny and we did. We loved Sinead immediately.

The medical care was excellent. The doctor arrived and said: "well, we should give the baby the three basic needs in life. She already had two of them: warmth & love. But perhaps she was hungry and should have food!" He asked Sarah if this was ok. Sinead also had a hare lip and so had to be tube fed. The nurse put a tiny tube in her mouth and fed her 20mls. Prior to that she nearly bit Sarah's finger off!! Sinead obviously enjoyed that.

Although becoming weaker Kevin & Sarah then decided she should meet her two brothers so we brought them to the hospital. Aiden is 5 now, Sinead was born on his birthday, and Niall is 2yrs 4mths. Aiden did not see any difference in her as we had him well informed that her face would be blue, but he didn't even question it. He just ran up to her and hugged her and said: "you're my baby sister. I love you and don't worry you're going to heaven!" This made us all cry but proud of her parents to have done such an unselfish thing in informing him all the time and not focusing on their potential grief.

Sinaed lived long enough to have a second feed also and a nappy change.

She went to God on 15th August but not without leaving a whole lot of joy and love behind as well as the sorrow of her parting.

And now let me tell you about what happened next and our spiritual care. The nurses had baptised her as she was not expected to live. When she died the medical staff said that Kevin and Sarah could bring her home in the Moses basket and arrange her funeral from home. They felt leaving her behind in the mortuary just didn't seem right. The decision was theirs. So they took her home to be part of the family. This was an amazing experience. Aiden sat on the bed with Sinead and said: "you've died but you go to heaven when you're in the coffin." He played his Lego and told her his sums. For a while Niall just ran around and held her hand when Aiden did.

The priest called often and prayed with us all. The undertaker was gentle and kind and Kevin was able to put Sinead in the coffin with toys and holy things and even Aiden was able to sit on the couch and hold the coffin.

When we left the house for the funeral they took her in the back of their own car and the grave was decorated by the friends and neighbours so the clay was not visible. The undertaker had made steps down so Kevin laid her to rest himself on a mat they put there. Prior to the burial we had Mass.

is living in England.

Last updated May 3, 2019