Kilcoo family’s plea for people to register for organ donation

Barbara Boyd

Reporter:

Barbara Boyd

Email:

barbara.boyd@outlooknews.co.uk

A KILCOO baby is living “on borrowed time” as he awaits an urgent heart transplant.

Time is running out for seven-month-old Ollie Grant who was born with hypoplastic left heart syndrome.

The only son of Damien and Riona Grant, the local family have shared their story not for sympathy, but to encourage people to sign up to the organ donor register and to tell their loved ones of their wishes.

Little Ollie has only spent 16 days of his short life at home - calling hospital his “second home” for the rest of the time as he has battled to stay alive on several occasions.

Damien and Riona, who are also parents to 23-month-old Aria, have spent four out of the last seven months at Birmingham Children’s Hospital.

Seven-month-old Ollie weighed a healthy 7lb 2oz when he was born in October last year

Their current admission has already been over seven weeks and it is unlikely they will be able to return home until Ollie has his heart transplant.

That is if one becomes available in time for the critically-ill youngster.

The local couple bravely shared Ollie’s story with The Outlook and explained how their young son continues to amaze them every day with his zest for life.

Riona said: “I found out in February last year that I was pregnant with Ollie. I then discovered at my 20-week scan in May time at the Downe Hospital that something was wrong with his heart and when we asked how severe it was, the sonographer said she had great cause for concern.

“We were then told that I was going to be referred to the Royal Hospital for a more detailed scan of Ollie’s heart.”

At the Royal Hospital, Damien and Riona met with a cardiologist who confirmed that Ollie had a condition called hypoplastic left heart syndrome.

“We were absolutely devastated as this is a birth defect that affects normal blood flow through the heart because the left side of the heart is so underdeveloped.

“This meant Ollie would have to undergo his first open heart surgery within the first few days of his life.

“We were told that the left hand side of Ollie’s heart was so small it is often referred to as half a heart.

“We also discovered hypoplastic left heart syndrome is more common than the right, but it is also more serious.”

From then, Riona was scanned by the cardiologist every four weeks and a foetal team also scanned her regularly too.

Riona said: “The doctors noticed from around 35 weeks the scans suggested Ollie had stopped gaining weight in the womb and made the decision to induce me at 37 weeks.

“My labour only lasted one hour 35 minutes. Ollie was born naturally on 1 October last year and weighed a healthy 7lb 2oz.

“The doctors were so surprised by his weight as they had expected him to weigh only around 4lb.

“We were told that he would have to be 5lb even before he would be considered for any surgery.”

Ollie has spent only 16 days of his short life at home, needing continuous medical attention and has battled to stay alive on several occasions

Riona was only able to hold her baby boy for just two minutes after he was born.

However, Damien didn’t get to hold him at all because he had to be taken straight away to the neonatal unit to be started on drug infusions.

Ollie was given a drug called Prostaglandin to keep the duct to his heart open because if it closed he would not survive.

The couple continued: “In a healthy baby this duct can normally close in the first few hours or days of life and so this medication was used to keep it open until he got his first surgery.

“Ollie also had to be put on a ventilator because he kept taking apneas, which is when he stops breathing temporarily.

“It was a long eight hours after they took him from us that we finally got to see Ollie again. We had asked a few times during this period if we could see him but were told it wasn’t appropriate as he was so unstable.

“We felt it was important to get Ollie christened in the neonatal unit the day after he was born because his future was and still is, so uncertain.

“In the neonatal unit all we could touch was Ollie’s perfect little hands through the porthole doors of the incubator.

“We got transferred to Birmingham Children’s Hospital via air ambulance and Ollie had his first open heart surgery when he was just seven days old.”

The local couple spent a total of four weeks in Birmingham where Ollie spent eight days in ICU following the open heart surgery on his first admission.

“It was incredibly tough with no easy answers. The first time the doctors removed him from the ventilator he seemed okay, but at 5am we got a call to come back over to the hospital as he was so very poorly.”

After a period of stability Ollie then came off the ventilator a second time and was flown back to the Royal for a week before being discharged.

“We only got him back home for a week when he was then re-admitted back to the Royal with bronchiolitis.

“He spent six weeks in the Royal with that but when the symptoms of bronchiolitis cleared, his oxygen levels remained low and did not improve.

“We were flown back over to Birmingham on 17 December and spent Ollie’s first Christmas in hospital.

“My mum and dad flew over on 23 December with Aria so at least we were all together as a family,” Riona said.

A tender family moment as big sister, Aria gets to see her little brother.

Doctors performed more tests on Ollie and he went for keyhole surgery which showed that he needed stents put in his heart.

“Ollie has very difficult venous access issues, normally surgeons would place a cardiac keyhole catheter into a vein in the groin area to fit the stents into the heart, but on Ollie they were completely blocked so the surgeons would need to go into his jugular neck vein instead.

“Ollie would need an intensive care bed for this procedure as this is a much more risky operation and there wasn’t a bed available.

“He came out of surgery not having any stents fitted because of this. A few days later he took really poorly on the high dependency ward on 22 December and went into peri-arrest which is what happens just before you go into cardiac arrest.

“He was resuscitated and the doctors discovered he had sepsis and pneumonia and his right lung had also collapsed.”

Since Ollie was so poorly doctors had to use an intraosseous (IO) needle into his leg which is the process of injecting drugs directly into the marrow of a bone in emergency cases.

This had to be done because his little body had started to shut down.

The couple said: “He needed this done in order to stabilise him as soon as possible because they couldn’t get any ‘iv’ drugs into him any other way.

“Doctors had to put him on two different types of ventilators at the same time as his oxygenation levels were so dangerously low.

“He was in ICU for a total of eight days again this time. In those eight days they got access into his neck vein and was able to go back to theatre to have his stents fitted.

“Sadly, 24 hours post-surgery Ollie suffered a massive stroke on the left side of his brain which caused him to lose his sight and all power down his right side.

“However, somehow a miracle happened and slowly over the following weeks and months Ollie’s sight has returned and his movement has vastly improved with the regular support from the physio team.”

The antibiotics started working and cleared the sepsis and pneumonia and then the stents helped the oxygen flow to his body.

The family spent six weeks in Birmingham at that time and got back to the Royal for a week.

“We then got home for a week but poor Ollie just kept getting virus after virus and he had to be re-admitted again.

“In total from he was born he has only spent 16 days at home with us. We have now been in Birmingham for over seven weeks and Ollie’s heart function after his second open heart surgery at the end of March has really deteriorated.”

Ollie became critically ill and spent 12 days in intensive care and it was after this that doctors decided the only option was an urgent transplant.

The little boy’s heart is now only working at 37 per cent and the transplant which Ollie so desperately needs is his only option now.

The couple continued: “He is on a drug now to help support his heart while he waits for a transplant but he is on the maximum dose which is currently keeping him stable, however without this drug his heart function could deteriorate more significantly.

“Due to his heart condition his next open heart surgery would have been when he is three years of age. However, Ollie’s heart function is too weak now to support him until this age.”

Riona and Damien, who were reunited with their daughter on Saturday past, have now made Birmingham Children’s Hospital their home.

“We live in hope everyday that Ollie gets a heart and although it’s is a massive operation and has huge risks involved, we pray that one becomes available very soon as each day the risk of deterioration becomes more predominant.

“Each day we spend with Ollie is so precious to us as we just don’t know how long we have him for.

“If Ollie is successful in getting a heart transplant it would give us time to spend as a family and make many more precious memories.

“Unfortunately, it does not offer a permanent solution and life expectancy is still limited. We still hope with the time a transplant would give us there will be much-needed medical advances in this field and may be able to help Ollie in the future.”

Despite Ollie’s incredibly hard start to life, the little boy lets nothing come in his way of happiness.

“He is so happy and just full of life and to look at him you would have no idea he has a life-threatening heart condition.

“We have often found Ollie sitting at the nurses station babbling to them when we have come onto the ward in the mornings.”

The couple said they continue to support each other through the darkest of times and thanked family, friends and colleagues for helping to make an “overwhelming and incredibly difficult time” more bearable.

Despite his health problems, Ollie's parents marvel at how happy and full of life he is

The family are now preparing to go to Newcastle’s Freeman Hospital on 12 June to sign a consent form for Ollie’s transplant.

There they will meet the team who will perform Ollie’s surgery if a heart becomes available.

“Organ donation is something that families maybe feel that they can’t talk about or don’t want to. However, it is so important. Let your family know your wishes and register now before it is too late.”

The couple continued: “We are asking people to think about it and to consider signing up. We know it is not for everyone - but please consider it.

“Talk to your family about your wishes because if they don’t know them they may not follow them through. Let them know that you want to donate.

“The future is very unclear for Ollie at the minute, but for us now, Birmingham is home for the foreseeable.”

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