Mother of child who defied all medical odds says carers like her need more support

Willow was only expected to live for a few days, but her mother Tracy’s love and tenacity has ensured she is leading a full life - but they both need more support, according to Tracy

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Life

Aine Kenny

19:14, 6 JUN 2023

Family carers look after their loved ones in their home, often with little to no help from the state. RSVP's new series, Caring For The Carers, chats to family carers across the country to find out about the challenges they face.

The mother of a little girl who was expected to live for a few short days but went on to defy all the medical odds says carers like her are exhausted from fighting for services.

Tracy Carroll from Meath says due to the lack of support for her daughter, she feels like she is holding her breath constantly. “Unless we beg and knock down doors we will not get anything. I want to know why the state cannot support us better.”

Willow was born in December 2016. She suffered a traumatic brain injury during her birth, and was sent home ‘to die’ five days later, according to Tracy. “Needless to say she didn’t. She has very complex medical needs. She has to be cared for 24/7, she can never be left unsupervised.”

Tracy says her and her family’s whole life changed in an instant. Along with Willow, she lives with her husband John and Willow’s older brother Noah. “My career was over, and at the start, it was so hard, having a tiny baby at home who you were told was going to die.”

However, Willow defied all the odds. “She is more than she was ever told she’d be. I was told not to breastfeed her, but I breastfed her up until she was two. I think this saved her.

“She says ‘dada’, she giggles, this is massive for us,” says Tracy.

Tracy Carroll with her son Noah and daughter Willow

Willow still has a number of complex medical and health needs, such as cerebral palsy and epilepsy. She finds it very difficult to sleep, meaning Tracy is up during the night to make sure she is okay. “I often wake up in a panic at night, wondering if she is still breathing. I usually get only three to four hours of sleep a night.”

Tracy’s day starts at 5am as she prepares all of Willow’s food and medication. She is the last one in the shower and the last person to bed.

Despite the challenges, they are a loving family. Tracy says as time went on, they adapted to Willow’s needs and were able to find the positives. “We don’t want to lose Willow. She is very hardy. Her personality shines through. We are lucky to have her.”

Thanks to her mother’s advocacy, Willow is currently attending school. “I had to campaign to get a classroom for Willow. Her rights are challenged from the get go - she has no easy access to things like school or sports.”

While Willow is in school, Tracy also has to be present as there are no nurses available to mind Willow. “I have to be there in case anything happens, so I never get a break."

She gets eight hours of primary care nursing on a Monday, which Tracy uses to catch up on paperwork and to spend time with Noah.

Noah has ADHD and often gets quite anxious about his younger sister’s health. “When Willow has a bad seizure, he’ll ask me if she is going to die. He’s only nine, he shouldn’t have to carry that weight,” says Tracy. “He’s missed out on things too.”

Tracy says it is very important to connect with other carers and reach out to Family Carers Ireland, as they offer things like counselling for the whole family.

In recent months, Willow’s health has not been the best, which makes Tracy very worried. “Everytime she gets sick I am afraid she won’t come out of it. She can’t talk, so she can’t tell us what is wrong.”

Due to the lack of help, Tracy feels like she is burning out. Her husband John often has to travel for work. “I am the captain. If I go down the ship sinks. Carers need to be looked after by the state.”

Family Carer’s lives would be made a lot easier with more support, according to Tracy. For example, carers like her do not get fuel allowance, and things like petrol costs are only increasing. “There are extra costs associated with disability. Willow has three to four medical appointments per week. There is a lot of travelling.”

Tracy believes a personalised plan and budget for each individual child’s needs could really improve the quality of life for disabled children and their families.

She also says that carers give up their jobs to look after their loved ones, but they don’t receive a wage for this - instead, they get carer’s allowance, which is means-tested and paid at set rates. “We are not eligible for a contributory pension, we don’t get PRSI stamps. Yet I work 24/7. You couldn’t pay one person to do what I am doing - it would take at least three nurses a week.”

Tracy adds that many carers forget their own needs and this drives them to ill health. “We can’t make any plans. Your family and friends forget about you. I would just ask other people to treat us with empathy - you don’t know the pressure we are under.”

In a statement, the HSE said it recognises the contribution of carers who care for family members, relatives and friends. "However, the HSE acknowledges that deficits in service provision and waiting times for some services at this time are not appropriate and particularly stressful for service users and their families or carers.

"The HSE is also very much aware of the importance of timely and appropriate service provision for the families of both children and adults and the impact the absence of these services can have on family life and on the ability of people with disabilities to fully participate in their communities."

Family Carers Ireland provides family carers with free emergency care planning, counselling, specialised training, wellbeing support, crisis management, emergency respite, in-home support, peer support groups, and information on rights and entitlements.

Family carers can call their freephone careline 1800 240724 or go to their website for more information.

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