Madison's story

Two year old Madison has spent most of her short life living on a hospital ward but with WellChild’s help she is now home with her mum and dad where she belongs.

The first time Madison’s parents knew that all was not well with their beautiful baby daughter was when a scan in the late stages of mum Danielle’s pregnancy revealed problems.

Madison was seriously ill at birth, she had an enlarged heart and small right lung. She was rushed to the special care baby unit at Blackburn hospital while her terrified parents waited to see if she would pull through.

It was a terrible worry for mum Danielle and dad Lee, especially as their baby’s condition gradually got worse and she had to go to Alder Hey Children’s hospital in Liverpool for observation. It was three weeks before the family could take Madison home for the first time.

But worse was to come. Madison’s condition deteriorated and she went floppy and blue in her mother’s arms. Her parents feared the worst and she was rushed to hospital where the decision was taken to put the tiny tot on a ventilator as she was struggling to breathe unaided. From then on she lived at Alder Hey hospital. At the age of just five months she had an operation to insert a breathing tube in her throat.

Madison suffers from a rare and very serious condition called Scimitar Syndrome and Bronchomalacia. Now aged two, the treatment she has had in her short life includes a cardiac catheter procedure to block some of her arteries and daily medication to reduce fluid around her heart and lungs. She also has to be fed via a tube directly to her stomach.  

The dream of having Madison living at home with the family seemed far away but WellChild have been able to offer some light at the end of a long dark tunnel for the family. Her parents were desperate to get her home with them and they are lucky that in this they have a powerful ally in the shape of WellChild nurse Elaine Hardiman.

Little Madison was living in the Transitional Care Unit at Alder Hey hospital. This special unit offers a home from home environment for children who will eventually go home with their mums and dads.

Elaine worked hard on the complex process to get Madison released from hospital and cared for at home.  Madison’s family need 24 hour support from trained carers to assist with all the little girl’s medical needs. Elaine has offered the family tremendous support, not only making all the practical arrangements but also taking time to explain everything to the family.

With Madison in hospital, mum Danielle and Madison’s brother Dylan lived near the hospital to be near Madison while Lee and the couple’s other daughter Macey visited at weekends and lived at the family home an hour away.

The great news is that now, with WellChild nurse Elaine’s help, Madison is back home and they are all living together again as a family.

“Life’s more normal now,” said Danielle. “The little things are what you notice like waking up and Madison is already there in the house with us – we couldn’t stay the night with her before but now she’s there and the daily routine is great.”

 

“Now she has started going to playgroup and we are hoping she’ll start nursery soon – she really enjoys herself there with all the other children.”

 

Madison seems to be thriving since she came home from hospital at the end of May. Danielle said that already the improvements in her daughter’s condition have been noticeable.

 

“She is loving it living at home and she has made a lot of progress. Her breathing is more stable on the ventilator. Her communication and her ability to walk now that she has come home have got a lot better – she is doing more things for herself and she is a lot more independent.”