'We have to keep Harriet's heart working as long as possible'
Mother-of-three Anna Fryer, and husband James, had already been through the trauma of their eight-year-old daughter, Olivia, having to undergo brain surgery to treat severe epilepsy.
And when baby Harriet came along the couple were distraught when told she had to have heart surgery at just five days old.
While recuperating on the ward, Harriet went into cardiac arrest in front of the Fryers and had to be resuscitated.
At seven-months-old, the little girl had another heart operation and she will need further surgery when she is two.
Harriet is now one-year-old and she loves spending time at Rainbows Hospice for Children and Young People, at Loughborough, where the family is supported by staff and other families coping with having a child with a very serious illness.
Giving an update on Harriet, Anna said: “Her condition is only palliative.
“We have got no cure, there is no miraculous light at the end of the tunnel.
"It is about managing her condition and keeping her heart working for as long as possible.”
Harriet has Hypoplastic Left Heart Syndrome, which was first diagnosed at Anna’s 20-week scan.
However, because of the visibility on scans, specialists could never determine the severity.
“We simply didn’t know what lay ahead,” said Anna, who also has a 10-year-old son, Isaac.
“When we found out all of this, our world came crashing down. The floor went from underneath us and we spent a lot of time wondering what on earth we had done wrong.”
When Harriet was born, Anna held her for a couple of minutes before she was taken to intensive care.
Anna lost a lot of blood during the birth and was also very poorly.
After Harriet had heart surgery, the couple were terrified when she went into cardiac arrest.
"Time just stood still,” recalled Anna. “She had got through all of this surgery and she had aspirated on a bit of milk. It was horrendous. She was resuscitated and had CPR for 12 minutes and then she was back in intensive care on a ventilator. It felt like we had taken 20 steps back.”
It wasn’t the first time the family had experienced trauma with a child, after everything daughter Olivia went through.
She has a genetic mutation condition called Hyperinsulinism, where her pancreas produces too much insulin.
In 2020, during lockdown, Olivia had brain surgery.
Anna recalled: “When she was nine-months-old, her blood sugars went so low that she was out for the count and ended up with brain damage.
“This left her with severe epilepsy and she had a really tough time. But since the surgery, she has been seizure-free.
“After getting through all of that, we thought we were in for a clear ride when we were pregnant again, but little Harriet put a spanner in the works.”
The family are now supporting the Rainbows’ Christmas Appeal because of the help the hospice has given them.
They took Harriet there when she was seven-months-old.
“I had heard of Rainbows but I didn’t really understand what they did and now, Rainbows has become a game-changer for us,” said Anna.
“It is fab to have that support network and to have people to help us go through what we are going through is just priceless.
“Harriet absolutely loves it and so do Isaac and Olivia; it is the gift that keeps on giving.”
The older children have received sibling support there and Olivia loves having play therapy there.
Isaac gets important support at Rainbows to help him cope with the serious conditions his sisters have.
As Harriet can’t swim in a normal pool as temperatures are too low, the family love spending time together in Rainbows’ hydrotherapy pool.
Anna and Harriet also attend the baby group and the coffee mornings
Anna said: “They are amazing. I chat with people that get it, and that has been a really big help. Until you go through something like this yourself, you just don’t know. I am with people who understand what it is like to have a child with complex needs and that is massive.”
Reflecting on the importance of Rainbows in all of their lives and the challenge of living with Harriet’s uncertain future, Anna added: “There is still a lot to learn and it is a bit of an unknown one.
"We take each day as it comes and take each day for what it is.
"We know there will always be somewhere to help us through the good times and the bad and Harriet will always need some level of support.
“It is reassuring that Rainbows is there for us, it is great to know that have somewhere that Harriet can always be her so we can enjoy her and celebrate her and for her to grow up around people who will understand her and hopefully have friends who she can form a relationships with to know that she isn’t on her own.
“For a long time, we didn’t even know if we were going to be bringing a baby home from hospital and now we have somewhere that meets her complex needs. That isn’t easily done and that is mega.”
Click HERE or call 01509 638049 to support Rainbows’ Christmas Appeal and help children like Harriet.