Kathleen Rose Harkin

Our daughter - Kathleen Rose

Tom and Tracy Harkin's baby daughter, Kathleen Rose, was diagnosed with Trisomy 13. Although they were told that she would not live for long, she has surpassed all expectations.

"Our daughter, Kathleen Rose, was born in November 2006. Shortly after birth she was diagnosed with a condition called Trisomy 13.  We were told her future was bleak.

If diagnosed in the womb she would have been termed ‘incompatible with life'. In fact, parents are often pushed to abort unborn babies like Kathleen Rose because they have a condition such as Trisomy 13 or 18.

That would never have been an option for my husband Tom and I. We were now parents to a very special little girl.

After she was born, Kathleen Rose was now termed ‘life limited’. Doctors told us she would be mentally and physically handicapped and might not even survive her first year.

We took her home to the love and care of her family

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Despite this dismal diagnosis, we continued to insist that our baby be given every opportunity to reach her full potential - no matter what that might be.

Doctors followed our directives and following successful surgery we welcomed Kathleen home to the love and care of her family. We've now had seven years with Kathleen Rose at the centre of our family.

She has defied all the medical experts. Kathleen Rose is not incompatible with life, she is the love of our lives!

Kathleen Rose with her brothers and sisters

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Our very own princess

She has a beautiful distinct personality and is known most for her mischievous laughter and enormous hugs. Last year she was the angel in the school Nativity play, and to all of us, of course, she was the star of the show!

I think children like Kathleen are such precious jewels within our society, because they give love in abundance - and they teach us how to love.

We become better parents, more loving  people and richer communities by having these pure souls in our midst.

Kathleen Rose as a fairy princess in her school play

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Support and help

I know that mothers and babies are never more vulnerable than when given a bleak diagnosis for their child in the womb.

It is vital that parents are given truthful, accurate information and realise there is always hope and support. The term 'incompatible with life' is such a hurtful, horrible phrase, since it implies that the baby's life is worthless.

Most babies like Kathleen  with a condition like Trisomy 13, do live beyond birth, and every minute of their lives is precious. Here in Ireland we know, that 90% of parents do not choose abortion in these situations.

And we know that proper services, like perinatal hospices, provide valuable education and support which help parents to choose Life. 

Kathleen Rose and her daddy Tom

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I recently had the privilege of listening to mothers who had lost their babies shortly after birth. They were so inspiring.

With the loss of any child, grief and suffering cannot be avoided. But these mothers described the immense comfort they gained from their precious memories of holding and loving their babies in their arms .

Their child was born, their child was loved, their child was named, and their child was laid to rest with dignity.

It is these memories that sustain parents when their child is gone: the celebration of a unique life, however short - because every life counts.

Every Life Counts

It really shocks me to see politicians and campaigners want to introduce abortion rather than help parents celebrate these precious memories of their children.

They seem to think that because our children have a profound disability, they can be targeted for abortion.

I know that in other countries abortion has cruelly eliminated huge number of unborn babies simply because they have been diagnosed as imperfect or because they are terminally ill.

Kathleen and Tracy

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But I also know that nothing on earth can replace the comfort and healing mothers and fathers get from holding their babies, and from knowing that they played no part in their child's passing.

I'd like to see every person count: a culture of life for all, irrespective of disability or life expectancy.

For, none of us are perfect and none of us will live in this world forever!

There is always a better answer than abortion. I know that. Kathleen Rose knows that. Let's make sure our politicians know it too.

Kathleen and Tracy

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Kathleen with some of her brothers and sisters

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Photos credit: Bill Smyth Photography : www.billsmythphotography.com

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TRISOMY 13 or PATAU'S SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage but research has also found that children with Trisomy 13 or live on average for 7 days after birth, while almost 31% live for more than a month, and almost one in 10 live for more than a year. 

Rasmussen SA1, Wong LY, Yang Q, May KM, Friedman. Pediatrics. Population-based analyses of mortality in trisomy 13 and trisomy 18. 2003 Apr;111(4 Pt 1):777-84.JM. http://www.ncbi.nlm.nih.gov/pubmed/12671111

Links Medline Plus Soft Ireland Irish Support Network International Trisomy Support Article in the Belfast Telegraph