Newsletter

Ian O'Brien
Shauna
Emma Boylan
Karl Shaun Lawlor
Christina Maria Martin

Below is a brief selection of S.O.F.T Ireland Newsletter Personal Stories.

LIVING WITH DOLLY by Ian O’Brien

 

Ian O’ Brien is the proud brother of Denise O’Brien. He made a very moving address to our AGM in Portlaoise. Here he describes what life with Denise has been like for the past 17 years.

Run last July, Geraldine O’Reilly asked if I would be interested in sharing my thoughts at the AGM about living with a child who has Edward’s Syndrome. I said yes immediately, thinking that it shouldn’t be difficult and that it might benefit those who heard it. When the time came, it turned out to be a lot more difficult than I imagined. It was emotional beyond belief as I went down many memory lanes we hadn’t been down since some of Denise’s earliest days. I’m told that there wasn’t a dry eye in the house that day in Portlaoise.

I’ve always loved Christmas Day, but 1985 was extra special. I was nine, my sister

Eunice was 11 and Mammy and Daddy (Mary and Derry) had a big surprise for us.

They made us wait until after dinner before telling us that we had a new brother or sister on the way. He/she would be joining us early the next July. We were ecstatic.

Unknown to us Mammy suspected that there “something different” this time round and the doctors in Our Lady of Lourdes Hospital, Drogheda, were quick to confirm this.

We never thought anything of the frequent check-ups which Mammy had to

undergo, thinking this was normal. Each one meant another trip to Drogheda for us and maybe a visit to Bettystown Beach, so we weren’t complaining.

On July 2nd, 1986, just three days into our summer holidays Mammy was rushed to

hospital early in the morning and at 6.10pm that evening Denise Mary O’Brien entered this world by Caesarian section weighing just 4 lbs 5 ounces.

I will never forget that glorious summer evening as we waited with our relatives for

news. At 6.30pm Daddy rang to tell us that we had a new baby sister with big blue eyes.

We spent the evening racing round telling anyone who would listen that “WE HAD A

NEW SISTER”.

The next day Daddy told us we couldn’t go to see Denise for a day or two because she was very small and weak and was in an incubator (what was that?), but he assured us she was all right. After a few days we were allowed to visit . . . up to the hospital’s fifth floor to see our new sister and Mammy. We were in awe when we saw this little scrap in a glass box with a tube in her nose who was our sister.

Then the questions. We learned that Denise was different to us, that she had problems with her heart and lungs, that she would probably never walk or go to school

or . . . WHY? - that was what we wanted to know.

That first month we got used to traveling to the hospital to see Denise. As a treat on

Sundays after visiting Denise we would go for a picnic to Clogherhead or to

Bettystown. After one of our picnics we went for a walk on the beach and Daddy told us the truth: Denise had a rare disease which meant she might not live long. She might never see home, Dunderry, Teddy the dog. We were devastated.

Five long months passed and Denise – or Dolly as she was christened by Uncle Jack was allowed home for the first time. After all the downers, this was most definitely a good day. Eunice and I cleaned the house, lined up her teddies in her cot and set a lovely fire. It was December 2nd, 1986, two days short of Eunices’s 12th birthday.

Our home would never be the same again.

Dolly’s cot was put in the kitchen, the warmest room in the house. Mammy and Daddy took turns to sleep on the couch beside her cot in case Dolly stirred.

And she did. Family life had to continue, of course. There was lunches to be made, shirts to ironed, and lots more in between keeping a constant eye on Dolly. We soon became accustomed to our new life.

Two shelves of the fridge door were taken up with her medicines and bottles. We got

used to the noises she made, her tube, her feeding times, when she needed her nappy

changed. Mammy and Daddy were both constantly exhausted.

As Christmas approached we were very excited and worried. I used to pray to God not to take her, to let Santa come to her at least once. My prayers were answered and Santa came for all of us. It was a Christmas I still cherish.

In February, 1987, Dolly got double pneumonia and the 5th floor at the Lourdes hospital became her home once more. She was Confirmed on admission. She seemed

too sick to survive and I prayed and prayed that she would get home again.

Three weeks later, against all the odds, Dolly came home again and what had become “normal” home life resumed. She bloomed and, by her first birthday, she was an absolutely adorable, living porcelain doll, with eyelashes to die for, according to every woman who laid eyes on her. Her first birthday was a huge celebration.

Everyone in our area knew about Dolly and her fighting spirit. All my friends knew her as did teachers and anyone else I met. In 1988, my school tour started with a visit of 5th and 6th class to my house to see Dolly.

I was such a proud brother naming off all of Dolly’s drugs and the times for each one

and how much.

On Saturday nights we had a video club. Between 12 and 20 friends would come to

our house to watch a film and tuck into hotdogs, burgers, minerals and crisps. As each

friend arrived they would go over and talk to Dolly, asking her how she was keeping, holding her hand and giving her a kiss. They treated her like a real person and talked to her as if she could understand them. Dolly made us a very close group of friends.

Even in our rebellious teens, everybody always made time for Dolly. If they hadn’t seen her in a while, the first thing they would ask me was “How’s Dolly?”

Instead of hanging round the village on cold Friday nights I preferred to home to be close to her, and the lads would come along - one or ten, it didn’t matter, we’d all traipse up to see Dolly.

Our house became a kind of a drop-in centre for lads looking for a cup of tea or a place to crash after a little to much to drink. I believe this happened only because of

Dolly. Thanks Dol. Close family friends whose son often frequented our couch still

firmly believe that Dolly brought the best out in all the lads and kept us out harm’s

way in our adolescence. One hot summer night, while a video was in full swing, Father McCarthy (God rest his soul) came by. A regular caller to Dolly, he made his way over to a pram to bless Dolly and chat to her. Mammy had to rescue him and direct him from Eunice’s doll to the real Dolly.

Dolly’s health was always foremost in our minds. As she grew bigger, the main problems were persistent kidney infections.

Whenever she gets sick it’s Mammy and I who do the panicking. Dolly has been in Lourdes three or four times. She can’t appreciate the experience, but it’s wonderful for Mammy and Daddy to be in this special place with their special daughter. The first visit to Lourdes was Daddy’s first time to fly. That wouldn’t have happened without Dolly. The first time they went off to Lourdes, Grandad Newman firmly believed that Dolly would be running and skipping around like any normal 7 or 8 year

old when she came home.

One hot summer day a friend, Roy, and I landed home for lunch. A woman from Limerick was there and she had a child like Dolly, but older. I was amazed. The likeness was uncanny. Mammy put a big quilt on the floor and put the two girls on it. I definitely reckon they were communicating through touch and noises.

This was Kay Fagan and her daughter, Elaine. This was the first of many wonderful

relationships to arise through our special children. Kay and Michael introduced Mammy and Daddy to the S.O.F.T. organisation and they started attending meetings in 1993.

Soon families like the Fagans, the Boylans, the Matthews and many more became household names and a whole new circle of firm friends have developed because of Dolly. I was delighted to see Mammy and Daddy getting away to meetings and dinners where they could talk to people like themselves. For eight years, we had been on our own, no specialist doctors or nobody to talk to.

Dolly’s cot was moved up to Mammy and Daddy’s room when she developed a good

sleep pattern at the age of 6. She has since moved into her own room, a princess’s room, as it should be. Sleepless nights are now few and far between, thank God. If Dolly goes to bed at half eight she usually doesn’t wake until half seven or eight the next morning. This gives them a well deserved rest in the evenings.

The children’s ward on the fifth floor of Our Lady of Lourdes Hospital, in Drogheda,

had been very good to Dolly. So in 1995 my friends and I decided to raise money for the ward. We held a headshave in Geraghtys, Dunderry, and raised £2,500, which was used to help buy a resuscitation care unit for the ward.

Dolly was my mascot. I carried her holy medals and a picture with me through the hardest days of school, college and exams. I believe that Dolly has brought out my better side in life. She makes feel lucky - I can decide what I want to do, she can’t.

I often wonder what she’d be like if she was a normal 17- year-old. She’d probably be doing her Leaving Cert this year, trying to make herself look older to get into discos and possibly bringing home her first boyfriend. But, without Dolly as she is, life would never have been the same. I never wished she was “normal”, despite all her sickness and complications over the years.

Usually as someone gets older their birthdays seem to have less significance apart from special ones like 21st. With Dolly, the opposite is the case. We celebrate each extra precious year, another year more than the skeptics thought she’d survive, another year more than many less unfortunate Edwards babies, another year of treasured moments to treasure for the rest of our lives.

With God’s help, Dolly’s 18th birthday will very special . . . a remarkable feat when the odds are stacked against you. When I met Jackie five years ago, we

found we had a common bond. Both of us had sisters with special needs - Jackie’s sister Olivia has spina bifida and is in a wheelchair.

From the minute Jackie met Dolly I knew she accepted her for the little person she was. She had the same caring side to her personality Dolly had given me, a caring side that can be fully recognised only by a person has a less

fortunate sibling. I get on famously with Olivia. I don’t see the wheelchair, but the wonderful person who didn’t choose to be in it. It makes me very happy that someone could come into my life and accept Dolly for what she is.

I used to get mad if I saw someone staring at Dolly. I used to worry about what some

people might think of her. But now it doesn’t bother me. I know that some people without experience of someone with special needs are going to stare . . . and it can

actually be quite amusing to see the look on their faces.

I am so proud of Dolly. She has had to fight for her life. She has the heart of a lion. She gives me courage to get through tough times.

She helped me through last summer’s marathon cycle from Malin Head to Mizen

Head when every sinew in my body ached. She inspired me to fight the pain, as she has done so many times.

I feel that Dolly has made saints out of Mammy and Daddy. They have such strength and courage. They offered us every chance in life and encouraged us to take the ones that would be most beneficial. If we can be half the parents they were to us,

we’ll be doing well. Eunice is a nurse. She is brilliant with Denise and a good substitute if Mammy and Daddy manage to get away for a few days.

Dolly brings out the “Andrex Puppy” in her Boardsmill brother-in-law . . . Jack Nolan

(Jack Nolo, as he calls himself) is only two and a half and he is so gentle with Dolly. Her knows that he has to “genkle”with her at all times.

I am very proud of how my family adapted to life with Dolly. It’s an ongoing challenge which I’m honoured to be part of. I believe the strength we draw from Dolly will get us through anything life throws at us.

Dolly is Dolly, always was, always will be. She has changed all our lives for the better. It’s a privilege to be her brother.

Shauna’s story

Early in the summer 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 a

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 loose 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 liked, 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’SSTORY A NNA -M ARIA ’ S D IARY

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 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 see you again.

To all of our new friends in SOFT Ireland, to Marian Finucane, to Joe Finnegan of Northern Sound Radio, 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

THE HEARTBREAK OF TRISOMY 18
By Caroline Kavanagh

This article is reproduced from the Drogheda Independent

Emma Boylan 29 Feb 1992 - 15 Jun 1999

"WE WERE RELUCTANT TO BECOME ATTACHED TO EMMA BECAUSE WE FELT THAT HER DEATH WOULD THEN BE MORE DIFFICULT"

Summer Newsletter 2001

IT may be the stuff of soap opera storylines as recently seen in RTE's Fair City, but having a child with chromosomal disorder is all too real for some families in Ireland. In the television series, in the pre-natal examination, pub owner Kay McCoy discovered that her baby was suffering from Trisomy 13, a syndrome associated with both mental and physical disorders, and opted for termination in the UK, causing a rift between herself and her husband, a former priest.

For Dessie and Joan Boylan, of Blackhall, Termonfeckin, Co Louth, the shock of their second child, Emma, being born with Trisomy 18 was devastating. However, the couple was enriched by Emma's presence during her seven-year life.

"Emma was a very special part of our family unit we couldn't imagine life without her. Fair City painted a dreadful picture of the disorder, but what we got out of Emma's life was enormous. The word monster was used by Kay and this created an awful image in people's minds," said Joan and Dessie. "Even if your baby lives only a few hours, parents gain so much from it."

Until Emma was born on February 29th in 1992, a leap year, her parents had no idea that anything was amiss.

"It was a frightening experience," explained Dessie. "We were very much in shock."

At birth the Boylans were told that Emma would live for two weeks at the most. "We brought her home to die," said Joan, "but in fact she lived for
over seven years."

Trisomy 13 (Patau's Syndrome) and Trisomy 18 (Edward's Syndrome) are the two most common syndromes, after Down Syndrome. Nine out of ten babies born with Patau's or Edward's Syndromes do not survive beyond their first year.

Trisomy 13 occurs in about one in 10,000 of total births, resulting in approximately seven babies both north and south annually.

The figure for Trisomy 18 is about 2.5 in 10,000 which results in about 17 babies each year.

The year in which Emma Boylan was born saw three
babies with Trisomy 13 or Trisomy 18 born in Co Louth.

The grief of having a sick baby was compounded by people being afraid to send cards or greetings for the new arrival. "You do want to be recognized as having given birth, even though the baby may be dying," said Joan.

Information on the two Trisomy conditions was not freely available to the worried parents. However, they got excellent practical help from nursing staff on how to manage their tiny daughter who weighed just 5lbs at birth. In hospital the whole family, including Granny, learned how to insert a nasal-gastric tube down the infant's nose into her stomach to feed her as she couldn't manage to suck. Emma was tube-fed for some time, graduating
later to spoon-feeds of pureed food. "We were very lucky with the level of family support," Dessie and Joan agreed. "Granny Julia Boylan could feed her, as could her aunts, Maggie and Sharon - and Maggie, a pre-school teacher, played with her all the time."

During Emma's first year of life she was in and out of hospital regularly. Her parents admit to being worried each time if she would come out again. "During this time we would go to the wee church in the hospital and pray that that Emma would die," said Dessie. "We felt that she would suffer during her short life and that we, her family, would suffer too. We were reluctant to become attached to Emma because we felt that her death would then be more difficult."

However, some months on, Dessie and Joan began to concentrate on Emma actually living rather than dying. At that time they found out about SOFT, the Support Organisation For Trisomy, a 32-county organisation for families who have experienced the disorder. "Evelyn Higgins, our public health nurse with responsibility for children with special needs, found an article on SOFT in a magazine and we attended the AGM," remembered Dessie. "The fact that there were other people there whose children had the condition and were all interested in each other's story and experiences was brilliant."

THROUGH their involvement in SOFT over the past nine years, Dessie and Joan have raised almost £70,000, split between Our Lady of Lourdes Hospital children's wards and SOFT, towards respite care and resources for children with Trisomy 13/18. The annual September cycle rally held in Termonfeckin has this year become a victim of its own success, having to become a walk in 2001 due to the number of participants and safety considerations. Sensory toys, so important for these children, are very expensive and it is planned to establish a "toy library" through SOFT where families can borrow equipment for long periods.

Little Emma's smile was the first thing which people noticed. Her bright face, happy smile and pleasant nature was evident to all. She loved to be hugged and kissed, and enjoyed rolling around on the floor with her sisters, Christine, now 12, and Julie, now 6. Although she had no speech, Emma was a very vocal little lady who loved to make noises with her toys on the tray of her buggy.

"Her eyes spoke volumes," remembered Joan. "Emma loved attention and was very responsive. We understood what she wanted. She had ways of communicating with us and understood what was going on
around her."

Emma loved to be outside in the shade watching the children play and hearing their voices. She loved the wooden playhouse in the garden, specially constructed and wheelchair adapted by her father, a carpenter. The Boylan family lived a full life, taking Emma away on holidays all over Ireland - and on one trip to Lourdes, which was sponsored by Joan's former colleagues in Telecom Eireann.

Dogged by heart problems, namely Eisenmaenger condition, Emma was in and out of hospital regularly, until her health deteriorated severely after her seventh birthday. With compassionate medical support from their family doctor and Nurse Higgins, along with an oxygen supply in the house, Emma spent as much time as possible in Blackhall. She died peacefully at home surrounded by her family on June 15th, 1999.

As Trisomy 13/18 is a chromosomal disorder which hits in a totally random selection, it is extremely rare for a family to have a second child with the syndrome. This was explained to the Boylans by a genetic counsellor following Emma's birth. All the same, two subsequent pregnancies were worrying times for Joan and Dessie. Thankfully their two younger children, Julie (6) and Andrew (10 months) do not have the syndrome.

HAVING just returned from the SOFT Spring get-together for parents and children, Dessie was quick to point out that SOFT meetings are not full of gloom and doom, but occasions where families offer support to each other and can laugh or cry with total acceptance. Most members of SOFT have lost children, so bereavement support is offered, whilst with new parents their living children are the main priority.

The organisation hit out at Fair City scriptwriters, claiming that the programme did not show both sides of the disorder. "They showed the downside of discovering during pregnancy," said Dessie, "but they didn't show the joy that the child can bring."

With experience of both sides, Dessie Boylan has become the new chairperson of SOFT Ireland, elected to the chair in November 2000, with over 150 on the SOFT membership list. A regular newsletter is produced by SOFT as well as information literature on Trisomy 13/18 and related disorders. Conferences and family days are regular features of their calendar of events, and they maintain links with SOFT organisations worldwide. They offer support during prenatal diagnosis, the child's life and after a child's passing.

 

Karl, ourprecious angel

Karl Shaun Lawlor was born on January 5th, 2001. He died on March 4th. His mother, Helen Lawlor, writes about the eight weeks of his life.

Summer Newsletter 2001

OUR beautiful Karl was born on January 5th, 2001, at 1.53 pm at the Rotunda Hospital, Dublin. He was born when I was 37 weeks pregnant and weighed 3lbs 14 oz. We got a shock at first and both thought he was just small for 37 weeks. But then the nurses noticed he had club feet. From then on our worst nightmare began.
Karl was taken away to be examined by a paediatrician and after about 10 minutes he came to see us in the labour ward. Nothing could have prepared us for what we were about to hear. He told us he suspected that Karl had Edward's Syndrome (Trisomy 18), although not all his features were typical. We had never heard of the syndrome and were in total shock. What should have been a happy occasion turned into a nightmare.
We asked the paediatrician about Edward's Syndrome. He told us that Karl's organs were incompatible with life and that he would not live very long. It was all too much to take in. We couldn't even cry, our bodies were in total shock. I was taken to a private room where we could be on our own. We couldn't understand why this had happened and it was all unreal. Later that evening we visited Karl in the neo-natal unit. He was so small but so beautiful. I felt such an overwhelming love for him that I didn't want to leave him. The next day the paediatrician visited us again, he said they had sent off blood tests and that we would have the results in a few days. Those tests would confirm that Karl had Edward's Syndrome.

On January 6th I left the hospital without Karl. He stayed in the Special Care Unit but it was so strange and sad leaving the hospital without my baby. On the Sunday morning we had arranged to have Karl christened in the hospital. We brought our other two boys, Darren and Craig, and my mother. It was a beautiful christening but it was tinged with sadness. We cried for this beautiful baby that we knew we couldn't keep. Karl stayed in the Special Care Unit until 9th January. He was then moved to the Paediatric Unit where he had his own little room and we could spend more time with him.

 

TWICE a day we visited Karl, once in the morning and then at night. It broke my heart to leave him there. On the Saturday we decided we would bring him home for the day. We collected him at 10am. The boys were so excited that their baby brother was coming home. I felt a bit nervous at first but after a while we just treated him like any other baby. Because he was our baby.We brought him back to the hospital at 6pm. It killed me to bring him back so we asked if we could bring him home permanently. They said there was no reason why we couldn't.

On Monday, January 15th, Karl came home. He was tube fed every three hours. We soon got used to it.
He slept between Pat and myself. Some nights he didn't settle very well so Pat stayed up nursing him while we went to sleep.

 

AS the weeks went on we increased his feeds and he began to gain weight. We were happy about this. He was thriving for one so small. So many people came to our house to see Karl. Everyone loved him. He was so special. Karl had 24-hour care. It was very tiring but we did it. He was our baby and we loved him so much. Karl started having apnoea attacks. He would have three attacks a week. This was very frightening but we got used to it. Once he was patted on the back he would start breathing again. At about six weeks these attacks stopped. We were quite relieved. He was still gaining weight and was about 5 lb 7 oz. We began to think that maybe he would live for a few months. But during the last ten days of his life he seemed to be uncomfortable, crying a lot between feeds. He only seemed to be comfortable when he could sit up and then fall asleep. We felt so helpless.
But we did everything we possibly could to make him as comfortable as possible.

On Saturday, March 4th, we took Karl and his brothers to the park for a walk. Little did we know that this was to be our last outing together as a family. We brought Karl to bed that night as usual. Pat fed him at 3am. I woke up at 7am on Sunday, March 5th, to find that our beautiful Karl had slipped away during the night. We were granted all we had hoped for. That he wouldn't suffer any pain and that we would both be with him when he died.

His life was short and he changed our lives forever. We will always love and miss him. Our precious angel.
He will look after us and his two brothers who will love and remember him always.

 

CHRISTINA MARIA MARTIN

Easter Sunday 1999: Baby Christina with her parents Moira and Jim Martin and sisters Laura 9 and Sarah 3 and brother Stephen 6

FEBRUARY 1ST TO MAY 10th 1999 14 WEEKS

by MOIRA MARTIN

Spring Newsletter 2000

Easter Sunday 1999: Baby Christina with her parents Moira and Jim Martin and sisters Laura 9 and Sarah 3 and brother Stephen 6

OUR beautiful baby daughter was born on February 1st,1999, at 1.13pm. She weighed 71b 13oz. We named her Christina Maria Martin. She was three weeks early. I thought this was a bonus.

After I gave birth, the nurses weighed her and Jim took a photograph. They handed her to me, congratulating us on the arrival of our fourth child. I cradled her, looking at her lovingly, counting her tiny fingers and toes. I turned to Jim and said "She's got six fingers on both hands." I was slightly alarmed. Jim thought I was joking, until her saw the extra digits.

Nobody had noticed this until then and suddenly the room went silent. Then the nurse took our baby and put her finger in her mouth. At this time we were not really aware of what she was doing. Then the nurse said that the baby should be checked by a paediatrician.

We were not prepared for what was to happen. What should have been a joyous occasion was about to turn into a nightmare. About 10 minutes later the paediatrician returned with Christina. She told us that our baby had an extra digit on each hand, a cleft palate, under-developed eyes, low-set ears and a heart murmur. More tests would have to be carried out, she said, and it would be best if she went to the Special Baby Unit. Both of us were numb, in complete shock. What did any of this mean?

A little later Jim went to see Christina - she was in an incubator with many wires and tubes. He became very distressed and had to leave. It was later in the evening before I could go to see her.

We spent that afternoon in tears. Nurses came and went. . . it was all a blur. Then, in the evening we met the paediatrician and discussed Christina's problems. She told us it could be a chromosomal problem, but she couldn't be sure until she got the results of blood tests. We cried again. Christina's blood tests were done the next day and we were told that it might take a week to get the results. We couldn't wait that long and expressed this view.

The following evening at 7pm the paediatrician broke the devastating news: Christina had Patau's syndrome or Trisomy 13, a syndrome we had never heard of and knew nothing about. She explained that babies with this condition did not live - "it was a condition incompatible with life."

We clung to each other in desperation, asking questions, which she answered as honestly as she could. It was a rare disorder affecting one in 10,000 babies. She left us to grieve alone. We cried again.

We then went to visit Christina in the baby unit. The nurses gave us a small room, where we could hold our tiny baby, cuddle her, kiss her, cradle her and photograph her. In the privacy of this room we wept for our little girl - she was not going to be with us long.

The next day our children came to visit. It was important that they got to know their little sister. They each held her and lots of photographs were taken. We also recorded the visit on camcorder. Other family members visited. There was a great sense of urgency - it was so important for everyone to see her.

On February 5th, I left hospital without Christina. She stayed in the Special Care unit. It was a strange, sad and empty feeling. I watched other mothers leave with their babies. I was numb.

We had arranged for Christina to be christened the next day, Saturday. This took place in the chapel of Holles Street Hospital at noon. We collected Christina. dressed her in her christening gown and was accompanied by a nurse to the chapel. We were joined by our children and immediate family.

The service was beautiful. It brought mixed emotions - both joy and sadness. We have the christening on video and lots of photographs were taken. Our eldest daughter, Laura, sang. The priest was gentle and kind and the little chapel was so tranquil. We had been given a book called "Why My Baby" by the social worker in Holles Street. Although we read it from cover to cover, we were still unable to identify with any of the family stories.

However, we at least knew there was a support group called SOFT available to us.

Christina stayed in hospital until February 18th. During this time we visited her twice daily, learned to tube feed and change the tubes. It was exhausting. We came to rely upon family, neighbours and friends who made all of this possible. They collected Laura 9, Stephen 6 and Sarah 3, who finished school and playschool at different times. We are forever grateful to these people.

Christina was not doing well in hospital. She was vomiting and not tolerating feeds. I wanted to bring her home, but we had to wait until Christina was stable and tolerating feeds.

At last, 18 days after she was born, we were bringing our little girl home. I was so excited but apprehensive. Our darling Christina had a heart murmur, cleft palate, was deaf and blind, her fists remained clenched with characteristic overlapping fingers. Her little legs, ankles, feet, arms, wrists and hands were frail and white - there seemed very little blood circulation. She would never see or hear us, her only
response was to touch.

Even with so many problems, she was still mine. I loved her so much. All I wanted to do was protect her.
At last she was ours. I couldn't wait for everyone to see her. Our front door stayed open that day, as neighbours and friends visited. They all knew she was very special and kept up to date with her progress in the weeks to follow.

Christina was pretty- there was no outward sign of her syndrome apart from her tube. She looked no different to any other sleeping baby.

We were fortunate to have a wonderful health nurse who visited daily. She shared our highs and lows. She loved Christina as much as we did. However, 24 hours-a-day care eventually takes its toll. It was all very tiring, but I could never leave her. The family unit slowly started to get back to normal. A routine began to develop and I eventually brought Christina for her first outing in her pram. I felt so proud. We brought Christina for her various check-ups. Each time the paediatrician was quite surprised at how well she was doing. We had increased her feeds and she was putting on weight. Suddenly it seemed that the goal posts were moving and she was to be with us longer than originally thought. Unfortunately, Christina was in pain and nobody could tell us why. The sound of her cry was uncanny. She began having apnoea attacks regularly. This alarmed us. She was admitted to Crumlin Hospital for observation. Nurses had to read up on the disorder as they had never heard of Patau's syndrome. By now we knew more than they did.

Christina stayed in Crumlin for one week. While there, her nose and throat were suctioned several times a day. This seemed to eliminate the apnoea attacks. We were given a portable suction machine and continued to suction her once daily at home.

On Monday, May 1Oth, I fed Christina at 7am. She went back to sleep. At l0am I bathed her, changed and dressed her. I had no idea I was preparing her for a new journey. I took her photograph. This was something I did every Monday.

I picked Christina up to give her the prepared feed. I saw her sigh twice. As I held her she seemed to slip away. I suddenly realised what was happening. This was not how it was to happen. I was on my own. I was not prepared. I broke down, cradling my beautiful baby. She was gone. She came and went on a Monday. I have her life in photographs. Jim arrived home. We took the children out of school and together we, her family, said our goodbyes to Christina, cuddling and kissing her. Our children were a part of her life from the start and were there for her at the end. We sat and held each other and the tears flowed.

Draped in white material sprinkled with gold angels, Christina was beautifully laid out in a Moses basket. It was all very unreal. Her funeral Mass was so beautiful. We arrived at the church and there stood the children of St Patrick's National School, Bray, Laura and Stephen's school. The girls stood in full uniform, dignified, heads bowed and each holding a single white carnation. The principal and teachers of the school deserve our sincere thanks. The guard of honour stretched in two lines right into the church. We walked through this wonderful guard of honour to the music of "Going Home". Walking by Jim's side, with our three children directly behind, as he fulfilled the hardest task of all, Jim carried Christina's tiny white coffin up the aisle and laid her in front of the altar.

The opening hymn "Bring Flowers of the Rarest" or as some may know it "Queen of the May" was then sung by me. Particularly chosen, as it was the month of May and because Christina was a beautiful flower and most definitely very rare. The funeral mass began and was attended by so many.

Christina's impact on the community was noted by the crowds that filled the church and by the tears that were unashamedly shed by all. This 14 week old baby had touched every one's hearts. Our celebrant carried out the ceremony in a beautiful, caring and personal way. Our children participated fully with Laura singing the psalm and offertory hymns and accompanied by the school children, Stephen reading the prayers of the faithful and the family unit presenting the offertory gifts carried by three year old Sara and six year old Stephen. We are very proud of them all.

The funeral mass was drawing to a close. The altar tilled with the remaining priests of the parish and neighbouring parish. My sister Josephine sang "Song of the Angels" accompanied by my other sister, Patricia, on organ. The final journey began.

Jim carried our tiny daughter in her tiny white coffin down the aisle through the tearful guard of honour. We travelled for the last time, all together as a family, in our car to the cemetery. A guard motor bike escort led the way. Laura, Stephen and Sarah thought this was great. The excitement of counting the motor bikes lightened the heavy hearts. Our time was running out, never to hold, touch, smell or see Christina again. The pain was unbearable.

Christina is now gone and our hearts broken. The passionate love I felt for her is indescribable. The loss is great and the constant ache remains.

My darling Christina is now in her heavenly home. We are privileged to have been chosen as her parents and equally privileged to have our very own special Angel. It's now Christina's turn to protect us, speaking into the hearts of Laura, Stephen and Sarah, guiding them always in God's love.

Christina will remain in our hearts forever. We love you and miss you so very much.

XXxxx