“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.”
These are the words of Anna who is mummy to one-year-old Harriet, Olivia (eight) and Isaac (10), when talking about our hospice.
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.
“It was a tough time and me and my husband, James, met a Cardiac Specialist Nurse who gave us lots of information and lots of hope for the best case and worst case scenarios but no one knew what was going to happen until she was born,” said Anna. “We simply didn’t know what lay ahead.
“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.”
For the family, it wasn’t the first trauma they faced. In 2020, during lockdown, Olivia had brain surgery. Olivia has a genetic mutation condition called Hyperinsulinism, where her pancreas produces too much insulin.
“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,” said Anna. “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.”
When Harriet was born, Anna held her for a couple of minutes before she was taken to NICU. Anna lost a lot of blood during the birth and was also very poorly.
Anna and James were told Harriet’s left ventricle is much smaller and compromised. At five-days-old she had heart surgery. “Visiting her in Intensive Care was so hard,” said Anna. ”She was so tiny in a special care cot. She had so many wires all over her and monitors. She was a little dot in a cot. We used to call her a baby burrito. Harriet just looked so perfect and you couldn’t believe there was anything wrong with her.
“A week after her surgery, she was on the ward and she went into cardiac arrest in front of us. Time just stood still. 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.
“Life was very hard. It was a very different beginning. Not the one we had planned. When Harriet was seven-months-old, we came to Rainbows. I had heard of Rainbows but I didn’t really understand what they did and now, Rainbows has become a game changer for us.
“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.
“Both children receive Sibling Support and Olivia has had wonderful Play Therapy. For Isaac, it is great for him to get that support. He has been through so much with Olivia’s condition, and now Harriet. I also get invaluable help from my Family Support Worker.”
As Harriet can’t swim in a normal pool as temperatures are too low, the family love spending time together in our 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.”
At seven-months-old Harriet had another heart operation and she will need further surgery when she is two. “Her condition is only palliative,” said Anna. “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.
“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.”
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.