Michele’s three-year-old son, Marcus, has had respiratory problems since birth and a tracheostomy helps him to breathe. But when it came to using a hospice for support, Michele was reluctant – until she realised how invaluable Hospice at Home care would become for her family.
During Michele’s first scan, doctors discovered her baby had congenital diaphragmatic hernia, where the baby has a hole in the diaphragm, and the intestines and stomach can enter the chest cavity preventing lung growth. The news had a huge impact during her pregnancy.
“I asked myself, ‘Why has this happened to me?’ and the pregnancy became very different to what you expect,” says Michele. “There was no element of fun, no anticipation of having a new baby, just a feeling of dread of what might happen.” Michele went into labour 11 weeks early while on her way to work.
“I’ll never forget the moment when I was asked if I wanted to go through a caesarean when my baby might not survive. I sat on the bed, by myself, just crying. As soon as Marcus was born, he was taken to intensive care. I was in a ward with all the other mums and all I could hear was babies crying and I knew Marcus was elsewhere, being kept alive.”
Marcus was in NICU for four months. “It was difficult to create that bond. It is so easy to take childbirth for granted. You have a baby, you go home and that’s it – that’s the rest of your life. But when your baby is seriously ill and you can only see them during visiting hours and it’s so intense because of all the equipment – it’s an alien environment. I spent most of the time sitting at Marcus’ bedside willing him to pull through, and when I wasn’t there I felt guilty. I used to think he was lying there wondering if I had abandoned him.
“When Marcus’ diaphragmatic hernia was repaired I thought that was the end of it, but it was only the start of the journey, really. He got recurrent respiratory problems and was often taken into intensive care. I had to go back to work three days a week as I had a mortgage to pay, so I’d visit him in the morning or evening. It affected relationships with friends and with my daughter. Understandably she got bored visiting the hospital all the time so I couldn’t spend much time with her.”
Doctors later discovered Marcus had tracheal stenosis, where the windpipe narrows and makes breathing very difficult. “The specialists kept talking about tracheostomies to help breathing but I really didn’t want him to have it because the complexities scared me. It was known as the ‘dreaded T word’ in my household. Eventually, he had to have it. At first I couldn’t even look at his wound. He hated having his tape changed and being suctioned and he would regularly vomit. I couldn’t believe what I was having to do to my child.”
Marcus’ full condition is still to be diagnosed. He still has respiratory issues and is ventilated at night, but the tracheostomy has vastly improved his quality of life. “Looking back, having the tracheostomy fitted was the greatest thing he’s ever had. It’s no longer the ‘dreaded T word’ and I am so grateful for that bit of plastic!”
Marcus started to eat properly, and then walk. It was a turning point, allowing him to come home from hospital and experience the type of life he should have had. Michele first heard about Shooting Star Children’s Hospices through the family’s community nurse. “The nurse and other families at hospital told us great things, but all I could think of were the negative aspects. But I went onto the website to refer myself and when a nurse visited us it completely dispelled the myths. When I saw the hospice I thought, ‘Wow, this is brilliant!’ It was like a hotel – swimming pool, music room, therapy rooms… Children were running around, others were painting, the food was lovely. The only problem was I wasn’t confident driving Marcus there, so the nurse told us about Hospice at Home and that’s where our relationship started. After the first visit I realised it was a service I couldn’t do without. I had to have it in my life!
“A typical visit starts with Jordan (Hospice at Home nurse) being jumped on and high-fived by my children! The children love him and he feels part of the family. Hospice at Home is a great service, not just for the supported child, but for the whole family. For my daughter, she knows it means she gets proper time with Mummy, which has helped get our relationship back on track. For me, I get a bit of time to myself, even if it means doing mundane things like going to the dentist. People don’t understand how difficult it is caring for a child with a tracheostomy. But all the things you take for granted when you don’t have a child with additional needs, we can now do thanks to Hospice at Home. I know Marcus is getting taken care of, not just medically but holistically, and the care goes beyond the visits. When I was applying for my daughter’s primary school Jordan wrote a letter from Shooting Star Children’s Hospices explaining why it would be the most practical option in my daily routine of working, caring for Marcus and being mum.
“People don’t realise how highly trained the Shooting Star Children’s Hospices nurses need to be. They are skilled in so many ways. They know Makaton, they deal with tracheostomies, ventilators – you name it, they know about it. But they also know your child as a person, their likes and dislikes. That’s one of the reasons parents like me can feel safe leaving a child like Marcus because I know he has the best care. I cannot imagine my life without Shooting Star Children’s Hospices.”
Help us care for children like Marcus and future generations, by donating to Shooting Star Children’s Hospices – click here to donate.