Thanks for taking the time to visit my JustGiving page.

 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

 

So please donate what you can, even if it's only £1.  Every little counts and adds up.

 

We are indebted to so many charities that helped us, during a very traumatic & emotional time, while we had our little girl, Olivia.  She was a very special, brave & inspirational girl, who had a smile for everyone, despite living a lot of her 17 month life in a hospital.  She underwent 6 heart operations, 4 of which were open heart surgery, a gastrostomy & nissen's fundoplication.

The first charity which we want to raise precious funds for is Great Ormond Street Hospital  (specifically for the new Heart & Lung Centre).  A truly amazing place where they really are working 'on the edge' & performing pioneering surgery.  We met some incredible people (both parents and staff) & I really don't know if I could work in such a high pressured environment where every day decisions could be the difference between life and death.  The nurses in CICU (Cardiac Intensive Care Unit) were professional, compassionate & meticulous in their care for Olivia.

The main reason I am doing this Xrunner, muddy assault course challenge on Sunday 8th Sept 2013 is to say a massive THANKYOU for giving us 17 months with Olivia.  I am sure that if GOSH were not involved in Olivia's life, then we might well have lost her after just 6 weeks.

What follows is a summary of Olivia's life and then the long version (which I wish could have been much much longer...)

Summary of Olivia's life:-

11th April 2008 - Olivia Louise Barrand born

17th April 2008 - Olivia had her coarctation of the aorta repaired. The operation was deemed unsuccessful a few hours later & she had to be rushed back into theatre for a stent to be inserted into her aorta via a catheter procedure. Dr Neil Wilson at the John Radcliffe hospital had saved Olivia's life.

April/May 2008 - The lack of oxygen after the 1st operation had caused Olivia to go into renal failure (kidneys were not working properly).  The heart was also not working efficiently so Olivia was unable to come off the ventilator and was 'stuck' in intensive care.  The longer she stayed there, the more likely she was to pick up infections.

May 2008 - Olivia was transferred to Great Ormond Street Hospital. 50 or so experts in the field discussed her case and were split as to what action, if any, to take to help her. Victor Tsang, a pioneering surgeon, came up with a plan that he thought might work.  The operation was successful!  Olivia came off the ventilator & was transferred back to the John Radcliffe.

June/July 2008 - Olivia gradually improved whilst staying in the John Radcliffe & the Royal Berkshire Hospitals, but had vocal chord palsy (couldn't make a noise, really sad when she cried and no noise came out) & horrendous reflux so sicked up a lot of her meds & milk.  Milk & drugs had to be fed to her through a tube that went through her nose into her tummy, to reduce the reflux.

August 2008 - Olivia was allowed home! We had to try to get her to gain weight and strength before her next surgery, which was due in October, to fix her complete, unbalanced, AVSD (atrio ventricular septal defect).

29th Aug - Olivia was blue-lighted to hospital as she was struggling to breathe. She had gone downhill very quickly.  Very stressful.

Sept/Oct - Olivia & I lived in the John Radcliffe.  Again, the aim was to build her up before her next surgery, whilst preventing her from getting any infections.  First AVSD operation postponed because of the fire on 28th Sept that destroyed the cardiac ward (Ladybird), in Great Ormond Street.

Oct-Dec 2008 - Olivia had 3 operations to fix her AVSD, all of which were open heart surgery.  All, sadly, were unsuccessful.  Bearing in mind that a person's heart is the same size as their clenched fist, these surgeons are dealing with something that is tiny & very fragile.  Each operation initially appeared successful, but within a few days, regurgitation around the valve worsened.

27th Dec - Olivia was christened in CICU, GOS.

28th Dec - One of Olivia's heart valves was replaced by a mechanical valve.  Surgeon Martin Kostolny had saved Olivia's life.

Jan 2009 - Olivia's health improved & she was able to come off the ventilator.

Jan-Apr 2009 - Olivia's reflux problem resurfaced & she was vomiting vital drugs which were keeping her safe.  In order to prevent this she had a Nissen's fundoplication operation and a gastrostomy.

10th Apr 2009 - Olivia was discharged from hospital!

11th Apr 2009 - Olivia's 1st birthday *at home*.

Apr-Jun 2009 - Olivia at home but we had a surreal life involving almost daily hospital appointments & a strict timetable of drugs/feeds through her tube.  Needed lots of support.

Jun 2009 - Olivia became unwell, deteriorating rapidly & crashed. Ended up on ventilator for a week. We were told that the mechanical valve had damaged her ventricle wall so the heart couldn't pump as efficiently as it should. Any infection could cause a repeat of the episode.  It was unlikely she would last until the end of the year. Devastating news. :-(

Jun-Sep 2009 - Had some lovely times together & created some wonderful memories.

15th September 2009 - Sadly, our gorgeous 17 month old, Olivia, lost her battle with congenital heart disease.  Just two days before her baby brother, Luke, came into the world.

 

Olivia's life story:-

Our beautiful daughter, Olivia, was born on 11th April 2008.  We had found out about her heart defect while I was still pregnant, at the 20 week scan.  We were thrown into a world of unknown medical jargon, stress & heart ache.

Olivia needed her first heart operation at a week old, once she was diagnosed with a coarctation of the aorta.  We had no idea what this was, when we first heard it, but it means once she started to breathe by herself, after birth, her aorta (main artery coming out of the heart) started to narrow.  The operation was to replace part of her arota with the subclavian artery in her left arm, to create a new, wider artery.

Devastatingly, this operation, which had a 95% success rate, failed & she was rushed back into theatre hours later to widen the 'new' artery (which had also narrowed) with a metal stent.  As a result, Olivia went into renal failure (her kidneys stopped working properly).

The operation was very risky as there was a high chance that the stitches holding the new vessel in place would come undone & Olivia would bleed to death.

It was one of the worst nights of our life...waiting for the call to find out if the second operation had worked or not.  I was throwing up with the stress, as well as dealing with leaking boobs, as my milk had come in.

Olivia spent about 6 wks in intensive care in the John Radcliffe, but wasn't really improving much.  Not able to come off the ventilator and breathe by herself.  We felt helpless. It was hard to maintain a sense of normality for Daniel, who was 18 months old when Olivia was born.

Nick had to go back to work, while I lived in the John Radcliffe with Olivia and grandparents dropped everything to help out with Daniel.

Olivia was transferred to Great Ormond Street Hospital to see if there was anything they could do, that the John Radcliffe hadn't tried, to get her off the ventilator & breathe unaided.

A pioneering surgeon, Victor Tsang, believed there was a chance....and successfully fixed her aorta during open heart surgery.  She came out of theatre with her chest still open, with plastic film holding her chest wound together.  This was to allow for swelling.  A pretty shocking state to see your daughter in (we could see her heart beating) & she was still only a few months old.

Gradually Olivia improved.  She came off the ventilator & it was slightly easier to cuddle her without all the tubes and lines.  Peeing was still problematic, but diuretic drugs helped.

We were even able to bring her home for the month of August!  But she was unable to feed properly, due to severe reflux, & so was fed through a tube that went into her nose, down to her tummy.  Life was on a timer. We became very organised intensive care nurses, living life round giving Olivia drugs & milk at specified times during the day & night.  Always being vigilent in case she deteriorated.

Not only was she born with a coarctation of the aorta, but she was born with the 'more complex, one in a million' condition, an unbalanced, complete, atrio-ventricular septal defect, or AVSD for short (!).

We were so utterly & esctatically over-the-moon that she had survived the coarctation, that we didn't want to think too much about more operations looming ahead...

At the end of August 2008 Olivia was blue-lighted into hospital by an ambulance.  Her lips had turned blue, at home, and she deteriorated rapidly.  I had to dial 999 & try to remain calm on the phone, while Nick & I were trying not to be too upset & emotional.

The Royal Berks stabilised her & she was transferred to the John Radcliffe, in Oxford.

The plan was to 'keep her well' & get her to gain weight and strength before the 'big' AVSD op.  We were told she would be a different child once she'd had the op & would be a much healthier little girl, full of energy and probably able to drink milk/eat food without the tube in her nose.

The wait was pretty stressful.  We wanted the op as soon as possible, but the timing had to be right for her well being. September is one of the worst months for chest infections though & everyone who has a bad chest infection goes to hospital (where it can be passed on...).

Olivia was transferred to Great Ormond Street for the AVSD op in October.  By this time, most of the staff assumed we were medically trained, having lived in hospital almost 6 months.

October to December was horrendous.  The stitches to repair the AVSD came undone, soon after the operation.  She was rushed back to theatre a week or two after the first one.  Her surgeon was on holiday abroad & Olivia's condition was so bad that if she didn't have further surgery, within 48 hrs, she would die.

More open heart surgery.  More 'feeling sick' with worry.  Life in limbo. Living in a bubble.  Are other people still just 'getting on with life' while we are going through this?!

Daniel's 2nd birthday on 18th Oct came & went - our friends rallied round so we could have a joint party & didn't have to think too much.

Nick's b'day on the 30th October was pretty non eventful.  No big party with friends & relees for him.  Our focus was on our precious Olivia & making life 'normal' for Daniel.

Olivia started to improve after the 2nd AVSD op.  Scans of her heart showed that there was still quite a bit of blood regurgitation, but outwardly she seemed to be coping.  We all started to let out a collective sigh of relief, without being too optimistic.

Once she came off the ventilator & was on CPAP (still getting a bit of help to breathe, but not so invasive), she was transferred back to the John Radcliffe, into the High Dependency Unit.

We were still a bit worried about her, but it was lovely to see so many familiar faces again & everyone assumed Olivia was through the worst, having now had both her coarctation & AVSD fixed.

Within a day or two, Olivia crashed.  We had been getting more and more concerned with her heart rate & the way she looked to be struggling to breathe.  Her heart rate had been steadily increasing & she wasn't able to sleep with the mere effort of trying to breath.  We watched helplessly as her heart rate suddenly shot down & her heart gave in.

We were rushed into the parents room while the doctors struggled to intubate her again.

We were devastated.

She couldn't be transferred straight back to Great Ormond Street because they didn't have any beds available. Then she picked up an infection & they couldn't risk moving her.

Eventually she was transferred.  Should they try again?  With another AVSD fix?  Her 4th open heart surgery since May.  Would it work?

There were no guarantees.  But what we DID know was that she would die if they didn't operate.  Her surgeon said if it was his daughter, then he would give it a go.

On 4th December, she had her 3rd AVSD fix.

Things seemed to go well.  She gradually came off the ventilator & came off CPAP for periods of time.  We didn't want to let our guard down & get too hopeful.  But things were finally looking up!!

I remember coming home one evening on about the 21st December, feeling all Chrismassy!!  There are photos of us drinking wine, with Nick's parents, & we're wearing fluffy reindeer antlers!  It wouldn't be long til we'd all be home as a family!  Me, Nick, Daniel & Olivia!!!

When I arrived back into Intensive Care the following day, there were glum faces & Olivia was back on the ventilator.

We were crushed.

What next?  What could they possibly do next to save our brave, little baby girl?

A heart transplant wasn't a viable option.  For starters, there are very few baby donor hearts that become available.  Also, Olivia was still in renal failure.  Her kidneys would not cope with the operation or the anti-rejection drugs.

Her heart would not cope if she had a kidney transplant.

So what was the answer?

The amazing medical team (about 50 experts in various disciplines discussing life or death solutions) believed that a mechanical valve to replace Olivia's current 'very deformed' valve would work.

The downside was that she was still very little & that this metal valve might be too big.  Also, she would have to have her blood checked every day to ensure it was not too thin or too thick (INR check) & we would have to give her warfarin to ensure she wouldn't get a blood clot in the valve.  The warfarin would be affected by diet & drugs, so we would have to take care to do it right.

Olivia was put into a drug-induced coma, on a ventilator, to keep her calm & rested.  We were told there was a very high chance she wouldn't make it through the operation.  It was also the Christmas holidays so Great Ormond Street didn't have as many staff as normal, so they wanted to hold off this major surgery until they had the best team for the job.

We spent Christmas Day with Olivia in intensive care.  Her wonderful nurse, Clare, had dressed Olivia in the fluffy reindeer outfit I had bought her, despite the fact she was so poorly.  Clare had also made a Christmas card for us, from Olivia, with her hand and foot prints on it. So kind & thoughtful.  Olivia had also received lots of presents that had been donated by friends of the hospital (including Harrods!).  We ate crisps & sarnies in the canteen, and then headed home to make Christmas dinner, which we ate quite late!

We had Olivia christened in Intensive Care on 27th December.  No candles were allowed due to the fire risk.  It was a very emotional time for all of us.

She had her valve replacement operation the following day.  A harrowing wait.

As normal, I burst into tears when I found out she had survived the operation (Nick tended to cry when we left her with the anaesthetist & I was strong, then the roles were reversed when we saw her afterwards!).

Again she started to improve gradually.  She came off the ventilator, moved onto CPAP.  I remember I was able to give her her first proper bath for months, in a baby bath, on my birthday.  Then she somehow managed to pick up flu & ended up in isolation for about a week & anyone visiting her room had to wear a mask & gloves to prevent cross infection!

After a while she actually started to have decent amounts of milk again (through the tube in her nose), but the reflux made an appearance again!  Throwing up warfarin, when it is being given to prevent your heart valve clotting up, is not a good idea.

So in March she was back in theatre again.  This time having a Nissen's fundoplication operation to tighten the top of her stomach muscle and stop the reflux & also to put in a feeding tube directly into her stomach - much safer & sturdier than the tube in her nose.

On 10th April 2009, the day before her 1st birthday, she was discharged home!!!

I think all our friends & family wanted to be there to see her & throw her a massive party to show how chuffed they were to finally have her home...but it had to be a bit more low key!  Nick & I hadn't lived at home properly for a year & still had a very poorly baby, who was on a lot of drugs and was reliant on us feeding her food (milk) through a tube in her tummy.  We had to be on-the-ball.  An incorrect dose of any of those drugs could be life threatening!!  No letting our hair down & going mad with the booze for us!!....I was also 3 1/2 months pregnant, with Luke, & still experiencing morning sickness!

Life was hard. But lovely.  You forget all the drugs, the feeding pump, the weekly appointments back to Great Ormond Street, the pricking Olivia's heel every morning, in front of cbeebies, texting our amazing consultant, Alessandro, every morning with the INR reading & receiving the warfarin dose text back.  Every other day there was one hospital appointment or another.

But we had our little girl home.  We could take her outside for walks, sit her in the garden! A novelty!

We had a few excursions, the memories of which we will always treasure.  The main one being a trip to the Cotswold Wildlife Park, but also a trip to Bracknell Forest with the Lockharts.  Anything further afield than that was a no no.  Even a trip to Nick's parents in Cambridge was too traumatic with all the 'gear' we'd need and the fact we'd probably have to inform Addenbrookes that we were there and fax them a summary of Olivia's history 'just in case'.

In June, Olivia's breathing became more laboured.  She was struggling again.  There had been issues with her weight...or was it fluid retention from renal failure?  Her kidneys relied on the diuretics, but there was a very delicate balance of fluids in her body.  A sickness bug could cause absolute havoc and mean a hospital admission.

So in June, during this sickness bug, she 'crashed'.  We were shocked.  We thought this wouldn't happen.  She was 'fixed'.  It was a big surprise.

A few hours later, once they'd stabilised her & she was back on a ventilator, a consultant at the Royal Berks asked us if Olivia normally has one pupil bigger than the other?!  They thought she'd had a stroke.

Again...absolute devastation. We couldn't believe it. After everything she'd been through.  It didn't ever enter our heads that she might have a stroke.  Would she recognise us when she woke up?

She was transferred to Great Ormond Street again.  We heard on the news that Michael Jackson died during this hospital stay - another shock. 

Again, they managed to bring her back from the brink.  She was all smiles again and back to her normal, gorgeous self!  How could she do it?  Time & time again?  What an amazing little girl.  No stroke.  Pupils back to normal.

But...consultants told us that she was a ticking time bomb. The mechanical valve had been pushing into part of the ventricle wall & had damaged it.  Once damaged, the heart does not repair itself.  Sometimes the vessels split off and make new communications to compensate for any damage, but this hadn't happened.  Part of Olivia's heart had died and it wasn't pumping very efficiently so any stress could be fatal.

They didn't know how long she had left.  Couldn't predict it.  But suspected she wouldn't survive til the end of the year.  They had run out of options for her.

Awful.

What do you do?  How long do you have? Should Nick just give up work to spend time with her?  What would we do for money? So we just had to get on with life & try to do as many things as we could with her.

She fell ill again 2 weeks before Luke was due.  It wasn't really anything serious either.  A cold, I think.  Affected her breathing again.  Our community nurse, Tamara, had already broached the subject of what to do if she ends up on a ventilator again.  There was a high chance she'd never come off it.

We were in the Royal Berks & I remember trying to calm poor Olivia down while they were trying to give her a sedative, to enable them to intubate her.  I wondered if it would be the last time I would be able to hug her, while she was conscious.  I really wanted it to be a special moment, but she was so stressed & uncomfortable, she was flailing out and very upset.

Great Ormond Street didn't have any beds available, so Olivia was transferred to St Mary's, in Paddington.  I had to go to their maternity wing and book in for a c section for the following Thursday, just in case I went into labour (I'd already had 2 c sections, it was too risky to go for a natural birth).  I also had a c section booked at the Royal Berks the same day.

We hoped Olivia would do her normal trick of bouncing back from the brink and surprising everyone again.  But this time she was very poorly.  Both Alessandro & Phil Rees, our main consultants from Great Ormond Street, came over to St Mary's to examine Olivia.  They didn't think she would recover.  And if she did, it would only be a short time before she crashed again.

We asked the grandparents to bring Daniel into the hospital to say goodbye to his sister.  He needed to say goodbye.  It would be too confusing to turn up back at home two days later with his baby brother & without his baby sister.

Olivia, our brave, inspirational, wonderful & beautiful daughter, died in our arms on 15th September 2009, aged just 17 months.  Luke was born 2 days later & never got to meet his sister.