Jacqui and John McNally
Shauna 26/05/05 (D)
Patau’s Syndrome
Early in spring 2005 listeners to Marian Finucane’s RTE radio programme heard the moving story of a couple who had just been told the baby they were expecting had Trisomy 13.
This is their story:
SHAUNA . . .
Dawn of Light sent to us
Within colours wildly
Dancing…Fondly
Our life and life of life Everlasting
Send forth flower’d rainbows
for a child, our child to follow rainbows
To show all we feel and breathe and hope
For you and you and you.
– Your Daddy
DADDY’S STORY
Dublin City: A busy bank holiday crowd formed a vague and translucent tapestry hurrying past two aimlessly lost souls trying to come to terms with the news they had heard but could not comprehend. A cold breeze shot up from nowhere. They held on to each other as tightly as they dared. The breeze harder now, as cold as the love of God. They were only 93 million miles from the sun.
Life for little Shauna Imelia compressed more into 19 weeks what others could not squeeze into generations. Our little girl was a Patau’s baby. We were advised to form a deep relationship with her. We had already done that. From that day high up on an Austrian hill when we found that we were expecting Shauna, she was the most loved child in the world. For two people for whom life turned from a living hell into a new hope.
We were given the option of undergoing a nuchal-fold scan at the Rotunda. This scan measures the fold at the back of the baby’s neck. A larger fold indicates possible problems, usually a Trisomy. After a silence from the consultant, news was given to us that, yes, the fold was very large.
We were advised to return in two weeks for an amniocentesis. Those were two weeks that we would not wish on anyone, not anyone. We researched all the Trisomies for all we were worth. What we did decide was that our baby was going to be the most loved child ever sent. We wanted her so badly.
Two weeks dragged past, and then back to Dublin. Another scan, another horror. Both consultants agreed that our baby had Patau’s Syndrome, Trisomy 13, and that her brain was badly affected. We were warned that these babies just don’t survive. They tried to do an amniocentesis but that didn’t work – Shauna was too feisty to be disturbed from her play. So they did a CVS and we were told the results would be back on Friday. Another trip up to Dublin. We were almost spent at this stage, but not Shauna. She was such a playful child. She never heard of Trisomy anything. She just wanted to play and play.
MAMMY’S STORY
It’s now May 26 and back to Dublin. This time we are going to get some counselling.
I’m not looking forward to going back to the hospital – it always ends up in tears. But not this time – we both come out feeling great.
A good start to our last week with Shauna. By this time Shauna is moving around quite a lot. I know she is still with us every time I feel her gentle moves.
As the week goes on John feels our angel for the first time. He is thrilled. It gives him some hope that he will see his daughter.
We try not to think of the day it will end but to enjoy what time we have with her. At this stage I’m so sure that we will make it well into 20 to 30 weeks that we start to settle down – but deep down it’s still in our mind that we could lose her.
I’ve started to cut my hours at work. The hours I do now is just enough to get me out of the house and take my mind off what we are going through.
Friday comes. Nothing unusual.
Saturday. My mother comes to stay.
Everybody is relaxed, not too worried about Shauna not moving. She was active for most of the week, so I just put it down to her quiet moment.
Sunday. A bad morning. Got up and things settled by that night. I could not remember her moving.
Monday morning. I don’t want to upset John. I can’t bring myself to tell him I felt nothing. So many times we went to doctors just to be told everything was all right. I met John for lunch. We’re both in low form.
Deep down we know Shauna has gone.
Tuesday. In hospital. So many doctors came, but I didn’t want to talk to anybody.
By Thursday we are drained – will it ever be over?
My mother has come to Dublin just to be with us. She rings to see if it’s all right to come over. We are all in the room when we get more visitors. The mood is relaxed mood. By lunch time it’s just John and I. Mum is back in the hotel resting.
At one o’clock things start to happen. At two o’clock it’s all over. Our angel has been delivered.
Calmness has now come over us. At last we get to see a beautiful angel. My mother comes over and we spend three lovely hours with her.
Friday. We lay Shauna to rest. The sun comes out. It’s so peaceful.
Nobody can ever explain how you feel when you lose somebody you love so much, especially your unborn child. We had six weeks to get to know our daughter, to name her and to enjoy every movement she made. It was hard not knowing what she looked like, but a wonderful feeling getting to know her inner self . We made a bond with her and that will be with us till we meet again.
We will always be grateful to my mother, John’s parents, family and friends who gave us a lot of love and support.
BIG SISTER’S STORY
ANNA-MARIA’S DIARY
March 6th, 2005:
Mother’s Day today. Told I was going to have a new brother or sister. Secretly hoped it would be a girl. I have wanted a sister ever since I could talk. So glad to hear that it could be happening now after 25 years.
April 9th 2005:
Told that there could be something wrong with the baby. Don’t know how I feel. Hoping against hope that the doctors could have it wrong. Will have to wait for two weeks before we can relax and get on with enjoying the preparation for the baby.
April 29th 2005:
Two weeks have come and gone. Have been on edge all day. This is the day we will find out if there is anything wrong with the baby. Waited all day for a phone call to tell me that the doctors were wrong. With every phone I hear ring I jump. I’m a nervous wreck. Eventually found the courage to ring Mammy at 8.30 in the evening. John answered: said he would ring me back in a few minutes. Had a funny feeling that something was wrong by the tone of his voice. Phone rings. I’m afraid to answer, don’t want to hear the news. If I don’t answer then I won’t have to hear what the doctors said. The doctors were right in what they had predicted; cried for mammy and John, cried for the baby, then
I was told that the baby was a girl; she will be called Shauna. My own sister after all the waiting, was “happy sad”, happy that I had my sister, sad that she was so ill. Felt that everything around me was spinning and wanted to curl up in a ball and not live anymore, until I heard my own little angel ask
“what’s wrong mammy, why are you crying?”
Put on a brave face had to be strong. Modern technology can get it wrong, it has happened before.
May 14th 2005:
Weeks have passed. Had an angry and frightening feeling in the pit of my stomach that I could not move.
May 26th 2005:
Cried my eyes out today, Shauna has left us, to go to a better place.
Don’t know what I can do to make this gloomy and terrifying feeling leave my body
May 27th 2005:
Feeling strong I can do this, have to do it for Mammy and John. Still standing don’t want to do this. Feel so proud of Darren, he is so strong to be taking Shauna on her last journey. Broke down when I realised that Darren could not let go of Shauna’s “princess bed”. My heart is breaking; I feel that part of it has gone with Shauna. Hopping that she is looking down on us all laughing and playing like all little girls should be.
May 29th 2005:
My birthday is a week away; mammy had a little party today for me. Got a card from Shauna, with sister on it. That “Happy Sad” feeling has risen from deep inside my body. It is more happy now as I believe that Shauna was meant for God
and He had a special reason for giving her to us for a short period of time.
Shauna will be with us and helping me, her Big Sister and two nieces through the hard times we may have to face in the future. She will always be remembered and loved until we meet face to face in the future, which I believe we will and then we can do all the things that sisters do together.
MAMMY & DADDY
If every person in this country got even a taste of the quality professional service the staff of the Rotunda rendered to us, what a wonderful health service we would have. It would be inappropriate to single out anyone in particular. The prenatal team and all the staff of the Rotunda Hospital, we thank you, you were wonderful and God willing, we will see you again.
To all our new friends in S.O.F.T. Ireland, to Marian Finucane, to Joe Finnegan of Northern Sound Radio, to all our friends, we thank you.
To come at swallow-time how wise!
When every bird has built a nest;
Now you may fold your wings and rest
And watch this new world with surprise;
A guest
For whom the earth has donned its best.
– To A May Baby by Winifred Letts