Wishes for LillyAnn




Aileen's daughter, LillyAnn, was diagnosed with anencephaly while in the womb

"I was told that she wouldn’t live after birth, but she proved them wrong and lived for six days. They really drum it into you that your baby will not live after birth.  I even went to a doctor who told me that she probably would be stillborn. So when you’re told you’re going to get nothing, to get six days is just a miracle.  She kicked a lot more than Kate, her little twin. Every night I would lie in the bed and say ‘Goodnight Kate, Goodnight Lillyann’ because I knew which side they were on, she would kick an awful lot more than Kate. 


We're coming to see an angel

When I had Fintan, Kate and Glen I always knew that I’d be so proud of everything they’d do. I was so proud of LillyAnn that she lived for six days. There were two wishes that I had for her; one that she would feel the air on her face and that she would be held and loved by everyone - that she’d know that she was so wanted in my family, that she was so loved and any length of time was enough with her. 

When she was born she cried just like Kate, I couldn’t wait to meet her. I had my whole family there joining us, and she was brilliant.  We held her and it was lovely to be with her and that we were able to pass her around and hold her. It was lovely to hold her. I’d give anything to go back to just that day. On the day that she was born, the hospital said that there couldn’t be anymore people in the room to visit her. That’s what I wanted because I wanted her to know that this was the family, this was the community she was born into, this was who was going to love you. She got to experience this and got held by everyone. You know, even Mammy’s friends were coming in, and that they kept saying ‘We’re coming to hold an angel’ - that’s just what I wanted!  I wanted her to feel so much love.

Aileen's daughter, LillyAnn, was diagnosed with anencephaly while in the womb


My best memories

I felt that if I stayed in the hospital, that would be my safety net; however, Declan, my husband wanted to bring his daughter home. So home she went. She came home the Monday morning and she lived at home with us until the Wednesday afternoon. I will never forget that day in between - that Tuesday. We got up and there was nobody in the house, there was only me, Declan and our four children. We were all together as a family, and we had to wash and clean them like we would have done if she was going to grow up with us. We sat down for breakfast and we had each one in our arms, and that was lovely. I think that's probably my best memory, this memory of my whole family together.

Aileen's daughter, LillyAnn, was diagnosed with anencephaly while in the womb

Aileen's daughter, LillyAnn, was diagnosed with anencephaly while in the womb

On the Tuesday night she had a terrible seizure, but I didn't want her to leave us. I didn't want her to go at that time. I wasn't ready to let her go. But, on the Wednesday morning, she passed away in Declan's arms.

Which was probably fair, as I do say, I carried her for 9 months, I knew all her little moves, everything, and he got to hold her at the end.

There's not a day that goes by that we don't think about her. There's not a time that we don't remember being together. I do certainly think that it brought my family closer together. Even Declan's family, brought everyone closer, she made me more relaxed in myself. I'd have never have worn hoodies or things like that, my job was a beauty therapist, I would have went into to work, immaculate hair, make-up everything; don't care anymore, I'm more relaxed, I'm a lot happier and that's a funny way to look at it, you know people think you should be grieving in yourself, but she made me realise what is important.

Aileen's daughter, LillyAnn, was diagnosed with anencephaly while in the womb

I would have never spent as much time with my kids, or played with them as much, but she made me see how absolutely wonderful they are. I have the three of them and they are really good kids, I love to be with them and I think she brought that to me.


Always in our hearts

Aileen's daughter, LillyAnn, was diagnosed with anencephaly while in the womb

I now celebrate Kate’s birthday on the 20th August, so we celebrate the 20th August every year and we’ve a separate birthday for Lillyann which is the 26th of August. Every year my family comes and we let off pink balloons as a memorial and we have a party for the kids in her memory.  Everyone has their own day. Glen has his, Fintan has his, Kate has hers; so she has her own day it’s the 26th August, the day she passed away. To me, its important that our children always stop and think on the 26th of August that they had a sibling who passed away that day. That’s very important for me, you know, that they go on and remember that, you know on, someday that they are busy, they look at the phone and it’s the 26th August and they go ‘Oh! Yeah! I must ring Mam’, Simple things like that, she will always be remembered by us.

For a little person to bring so much into our lives, was great.  You think you’re untouchable, but you’re not. You think you won’t cope with things, but you do. What doesn’t kill you makes you stronger, you know and it’s very true. I don’t think we should pick and choose our children, I’d never pick and choose between any of my four. I’d never say well, you’re not worthy of being born because you didn’t have your cranium, no I could never pick and choose that way. No one should have to, because every life is precious.

Aileen's daughter, LillyAnn, was diagnosed with anencephaly while in the womb

She has changed our lives dramatically. Being a single pregnancy, if it happened to me again I would bring the baby without a doubt full term.  All children are important being born: you can’t pick and choose, it’s pot luck and I got lucky."

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ANENCEPHALY is a neural tube defect which means that the baby's skull and brain do not develop correctly in the womb. A recent study published in the British Journal of Obstetrics and Gynaecology found that 72% of babies with anencephaly lived for a short time after birth. Of those children, 25% lived up to 5 days, while up to 7% lived up to 28 days after birth.

Jacquier M, Klein A, Boltshauser E. 'Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.' British Journal of Obstetrics and Gynaecology 2006; 113:951–953