Personal Stories

A view from Intensive Care
Time for School
Being small isn’t too bad
Claire’s story

I was a premature baby who very nearly missed my chance of life, but now I'm a.. rocket scientist
By Beth Neil. The Mirror.. 30/06/2009
or Read the story at www.mirror.co.uk

This is a truly inspiring story of one of very tiny preterm babies born at 28 weeks 22 years ago and who is now working at NASA.  A tribute to the skill and dedication of the Maternity and Neonatal Unit and everyone involved in her care.

This story was covered by one of our mums Julie Joyce whose triplets all girls were delivered at Kingston Hospital in the last year.

She's the girl who gives frantic parents of premature babies more hope and reassurance than any doctor.

Vinita Marwaha was born at 28 weeks weighing a pitiful 1lb 10oz and was so tiny she was nicknamed Minnie by nurses who did not expect her to survive.

But two decades later, the 22-year-old is brimming with health and blessed with an abundance of brains - and is now a rocket scientist who has just started working for Nasa in California.

And she visits the special care unit where staff battled to save her as often as she can to help ease the fears of parents keeping vigils at desperately sick children's incubators.

Still affectionately known as Minnie by her adoring family, she says: "I've always known I was close to death when I was born, and have always been incredibly grateful to the doctors and nurses who cared so well for me. I was the smallest baby they'd ever treated.

"Throughout my life that's made me work harder, knowing I almost missed my one chance of life and knowing so many people were rooting for me.

"A few weeks back we had a reunion at the hospital, where I met all the team who looked after me and it was overwhelming.

"So I'd love to think I've helped other parents of premature babies at the hospital by giving them some positivity, because I just want to try to repay the huge debt I owe."

Minnie, from Surbiton, Surrey, overcame fears of brain damage and other health problems often linked to premature birth.

She will teach physical sciences at Nasa for the International Space University and is on course to become an astronaut in around seven years' time.

She has a masters degree in astronautics and space engineering from Cranfield University in Bedfordshire and has spent the past few months doing her thesis at the International Space University in France.

Her work sounds like science fiction. She says: "I spend most of my time designing rockets, my latest project is studying the effects of moon dust on space suits.

"It's funny when I meet new people, because as soon as I tell them what I do their jaws drop. They rarely believe me.

"But I want to learn to fly and it's my life's ambition to become an astronaut and fly to the moon. I'll work as hard as I possibly can to get there. I feel I owe it to everyone who's cared for me."

Minnie's parents Kim and Bob, both bank workers, are fiercely and understandably proud of their daughter, who was born at Kingston Hospital. Kim, 55, says: "Seeing Minnie now, so healthy, happy and successful, makes me want to burst with pride. I can barely believe she is the sam e tiny little mouse we could barely see in the incubator, clinging to life.

"When Minnie was born I couldn't see her for three days. I was sure she'd die and couldn't face getting attached. Two years previously Bob and I lost a baby girl, who was born at 30 weeks weighing 3lbs.

"My husband had to turn off her life support machine when she was only a few days old and we were broken hearted.

"So since Minnie was born even earlier and lighter, I was terrified every time a nurse came to see me at hospital because I thought it was bad news. "But they said, 'Minnie's a fighter. She's doing well and you must come to see her.' "And of course I fell instantly in love. "We worried she was brain-damaged because she was so tiny. Who knew she'd grow up so brainy. She could read and write aged three."

"She was so small nurses used to pop her in their pockets to keep her warm. She was so weak they banged on the incubator to startle her and remind her to breathe because she'd drift off. She didn't even have the strength to cry.

"But she had a strong head and was well enough to come home three months later."

Minnie, whose sister Nikita, 18, was born at 30 weeks weighing 3lbs, showed early interest in space, science and engineering.

Bob, 64, says: "Minnie's cot was by the window and we'd always find her standing up, looking up into the sky at the moon.

"As a toddler she was obsessed with the children's TV programme Button Moon, watching it for hours and hours. Aged five she taught herself to pre-set the video recorder, which I still can't do now.

"When she was six she could name all the stars. Three years ago we flew in a helicopter over the Grand Canyon on holiday but she was more interested in asking the pilot about his controls than staring at the incredible sight below.

"But Minnie has never forgotten the people who helped her come into the world and gave her the chance to enjoy life. She is always raising money for charity Born Too Soon, which helps premature babies and their families. It is that, not just her achievements, that make her mum and I so proud."

Anne Boatman was a sister at Kingston Hospital and part of the team that helped care for Minnie. Now a liaison health visitor, she met her again for the first time last month.

Anne says: "Seeing Minnie and comparing her to how she was, moved many of us to tears. "Minnie doesn't remember all the medics who helped look after her, but we have never forgotten her. So although her family are proud of her, we are too."

To donate to Born Too Soon visit justgiving.com/borntoosoon or contact Pauline Woods, co-ordinator, Neonatal Unit, Kingston Hospital NHS Trust, Galsworthy Road, Kingston, Surrey KT2 7QB, 020 8974 9157. For more information visit www.borntoosoon.org.uk

BUT MINNIE WAS NOT QUITE THE MINNIEST

The world's most premature baby is Miami's Amillia Taylor, who was born at 22 weeks in October 2006, weighing just 10oz. She measured 9.5in.

Britain's tiniest baby Aaliyah Hart was given a one per cent chance of survival after she was born weighing 12oz at Birmingham City Hospital in May 2003. She arrived 12 weeks early measuring nine inches long and could fit in the palm of her mother Lorraine's hand.

Around one in eight babies requires some form of special care. This equates to more than 80,000 babies every year. Around 22,000 of these need intensive care, often for many weeks or even months.

A view from Intensive Care

When I was born, to my surprise, I really was quite small,
So I was very lucky Doctor Julie was on call.
She took me to the unit and she helped me settle in,
On reflection, looking back, it’s an odd way to begin.
I saw my daddy briefly, then he had to go away,
I didn’t see my mummy ‘til much later in the day.
They both looked very worried and I thought a little sad,
They cried and said they loved me and I knew that I was glad.
By then I’d met Mabella and Doctor Martin too,
They saw that I was sick but knew just what to do.
I remember Doctor Winrow then, he was really very kind,
He helped mummy and daddy, he gave them peace of mind.
It’s true an incubator’s not the greatest place to be,
But when you’re well enough to look it’s amazing what you see.
Doctor Nick was wearing hair bows, to hold back all his curls,
But best of all by far, no doubt, are all the pretty girls.
I didn’t have a favourite, I thought that wasn’t wise,
Instead I gazed at all of them with beautiful big eyes.
It must have worked a little, I did get lots of cuddles,
But I’m sorry for those times I know I caused some muddles.
Mabella held my arm for hours to get the blood to clot,
Pippa stayed all afternoon when I "Brad-ed" quite a lot,
Donna made the doctors leave me, she said it wasn’t fair
And Antje stroked my head one night while Lucy shaved my hair.
In the end I was evicted because they needed space,
But I went to high dependency a smile on my face.
However good some times had been whilst in intensive care,
They were not as good as knowing I was no longer there.

Time for School – Sophie’s Story

Sophie’s story was first told in the Born Too Soon Millennium edition newsletter; at that time she was nearly 2 years old.   Now she is 4 and starting school in September.  Sophie was born at 29 weeks gestation, weighing 1,22kg.  She was on the NNU for 52 days.  She suffered two bleeds in her brain, one of which left her with a left-hand side weakness.  She also had suspected pulmonary stenosis and heart murmur.  Four weeks after her birth she fought off a viral infection that saw her ventilated.

When Sophie was 2 years old it was time to think about playgroups.  Harriet (now 6) had gone to an excellent playgroup and we automatically put Sophie’s name down.  At this time her speech was below average and she was very one sided, not using her left side as much as she should have.  The "Aunties" at the playgroup had known Sophie since she was 7 months old.  She would run into playgroup when we picked up Harriet, but when it came to her turn she was not impressed and cried when I left her.  The "Aunties" were very patient and caring.  The same month I was to start training as a midwife and our au pair arrived from Hungary.  I felt guilty that having been at home for 3 years I was going to do something for myself.  I was a teacher before Sophie but felt that I didn’t want to return to it.  Midwifery to me seemed an obvious choice, giving back some of what I had received, good care and support, through three pregnancies and labours.

I did, however, land on my feet.  Agi, our au pair, has been a godsend.  We had not had an au pair before but she quickly became part of the family.  She adores the girls and Sophie blossomed with her. They learnt to speak English together!!  Sophie settled into playgroup and quickly became more independent.  My Health Visitor had referred Sophie to a speech therapist, but by the time the appointment came, 4 months later, Sophie had caught up.  At 2 and a half Sophie started ballet and tap dancing, which has been very beneficial in strengthening her left hand side, and she has enjoyed being in a dance show in front of an audience of 150+ as well as her first rosettes!

At 3 she started swimming lessons.  In the last two years she has been discharged from Kingston and the Brompton with what the letter calls an "uninteresting heart murmur" and nothing else.  It is frightening to think that in September Sophie will be in uniform, starting school.  To me she is my baby, the youngest of our three daughters, which means like any youngest child she gets away with things!&n bsp; Her sisters have always been very good with her and it is only now that Emily (9) will tell her off, but they are very protective of her when amongst others.  They will be at school together and another milestone reached.

Four years ago I could not have imagined this, we were just getting by day by day in the NNU.  I haven’t found it necessary to tell everyone Sophie’s beginnings and problems.  Playgroup knows as will school but her dancing and swimming teachers have no idea.  She still is weaker on her left side but most people would not notice this now without looking for it.

I am currently a student midwife at Kingston as well as helping Pauline Woods as parental support for NNU.

Louise Mulcahy

Being small isn’t too bad

My name is Cumaren Sivalingam. I was premature and born at 23 weeks. I was the size of a biro and weighed 1 pound 6 ounces. I am now in Tiffin boy’s school and I am in Year 8. I am still the smallest boy in the school. I always have problems in makin g people believe my age.

Normally when I go and talk to someone and they ask me how old I am, I tell them my real age but they don’t believe me. Then I tell them that I was the size of a biro.  What do you think happens?  They think I am a weirdo and of course they never believe me.

In my previous school, Latchmere Junior School, I was always the smallest in my year too.  A lot of people ask me “do you like being small”.  My answer to that question is “yes and no”. No, for people not believing my age so I would not be able to see a film that was my age. Also when I go to theme parks with my friends I wouldn’t be able to go on the ones with height restrictions so I would watch my friends while they are on the ride. Yes, because I like having the title of being the smallest boy in my school.  Sometimes I feel unique. 4Sometimes you are popular and feel like a celebrity. I play lots of sports.  I am in a local football team. I also play basketball, tennis and cricket.  You may think I can’t play basketball because I’m too small. Small people are very goo d at basketball, and though people might tease me, I use it as an advantage over them and can get past big people.  So we have the advantage to speed past them and shoot and score or pass to someone.  I have something very important that I would like to say to people who were born premature or who are small for their age:

GOOD THINGS COME IN SMALL PACKAGES. ALWAYS REMEMBER THIS WHENEVER PEOPLE PUT YOU DOWN AND REMEMBER YOU ARE UNIQUE.

Cumaren Sivalingam

Claire’s Story

I was 25 weeks pregnant.  I got up, went swimming, returned home for breakfast and headed to Kingston hospital with Stephen for a quick blood pressure check.

Plans were to do some shopping in Kingston afterwards where I remember I hoped to buy sandals for the summer.  Life was that simple.  By 1 o’clock I was installed in a single room at the edge of the ward, in a state of shock I think.  The next afternoon we were taken for a growth scan and Doppler scan, told that our baby was very small for it’s gestation and that because of my high blood pr essure and failing placenta, caesarean delivery was to be expected at any time.

That evening we were taken to visit the neo-natal unit, where we met a little boy who was very premature and believed to be about the same size as our baby.

As the days unfolded I was monitored, the baby was monitored, I had medication for my blood pressure and steroid injections to help mature the baby’s lungs.

After several days the plan was to keep the pregnancy going for as long as possible without harm to either of us.  To have more growth and Doppler scans in two weeks to check growth and blood supply, and in any event to try to reach 28 weeks.

I spent the next two weeks cocooned in the maternity unit.  The view from the window looked across the roof to another room, where every few days I saw a row of congratulations cards appear and then disappear, over and again.  Everyone’s life seemed to continue around me and I felt numb wandering round the corridors in the middle of the night.  Like a recurring nightmare every corridor led me to the sign for the neo-natal unit.

On week 27, day 3 I went for a second set of scans and was wheeled back to my room.  About ten minutes later the entourage of consultants and doctors came in and said, "Tomorrow morning, we can’t leave it a ny longer".  I phoned Steve at home who was due to work that night and I think my only words were, "It’s tomorrow".

On 12th June, I had the caesarean section and at 12.40 pm the anaesthetist said, "It’s a little girl".  The paediatricians took the baby to one side and told us she had opened her eyes and tried to cry.  Stephen went over to see her, and as they put her in the mobile incubator I looked across and saw a little arm in the air, and so our lives as parents began.

I met my little girl the next day, at least what I could see of her beneath the technology that helped her stay alive.  Claire Louise was the name we gave her, and when I later looked up the meaning of these names in the book at the unit, I found Brave Warrior.  She had the excellent support and care of the unit and a name we hoped would bare true.

Claire was ventilated for only a short time, 36-48 hours, and then she began her long residence in the incubator, starting with ten days of CPAP.  Five days after giving birth I was discharged from hospital and on the same day I held my baby for the first time.  I still can’t believe that during those five days in hospital I didn’t visit Claire very often, and when I did I couldn’t stay for more than a few minutes, that still makes me cry.

The days rolled into weeks and after five weeks Claire was moved to high dependency in the incubator.  Three weeks later I arrived one morning to find her in a cot on lo-flow oxygen.  I cried.  One week later on a Thursday evening Sister Monica walked into high dependency and said, "Right let’s go".  She unplugged Claire’s lo-flow and we ran down to low dependency and plugged her in.  We were on the last leg of the journey out to the real world.

At just over nine weeks old, together with oxygen tubes Claire had her first bath, a very brief affair.  Three weeks later Claire was a normal baby lying in a hospital cot, no lo-flow and no monitors.

During the next ward rounds Dr. Winrow came in, looked at Claire and looked at me.  "Is it the ‘H’ word?" I asked.  "Yes," he said, "home on Monday".

Claire came home the day before her due date; she spent 87 nights on the NNU in the expert care of its staff.

What did we do?
We spent h ours doing kangaroo care getting to know our daughter, learning to care for her, and letting her know who we were and that we loved her dearly.  We talked to her constantly and made up stories of fairies that would help her grow strong lungs and elves that would bring barrows loaded with iron to boost her haemoglobin levels.  You see we really did do something…….

Claire Louise lived up to the meaning of her name, and will be 3.5 this Christmas.  A bright, sunny little girl that makes me laugh every day, this is the first chapter of Claire’s story.