Parenthood is far from easy, the sleepless nights, constant doubts and nagging fear that you’re messing it all up can weigh heavily on mums and dads, but add an unwell baby into the mix and you multiply your struggles tenfold.
The struggles of parenting a sick baby
This is the reality for NSW parents Hayley and Michael Fulginiti. The couple’s six-month-old daughter Grace was born with Pierre Robin Sequence (PRS), a condition that has left her with abnormalities of the jaw and tongue, as well as hearing problems. While the exact number of babies born with PRS in Australia is unknown it is somewhere between 1 in 6000 to 8500, according to various statistics.
Little Grace requires constant monitoring in case she stops breathing, every meal requires tube-feeding and leaving the house can be a consistently overwhelming experience for Hayley. Especially when juggling the needs of her son Lachlan, 8 and daughter Amelia, 6, who was also born with the same condition as Grace.
History repeating itself
PRS was a condition Hayley was already aware of as both her mum and younger sister had it when they were infants.
“The big difference was that my sister was still able to be bottle fed and she didn’t have the obstructive sleeping that my girls have,” Hayley says.
After several close calls with Amelia, which included a time where she stopped breathing while Hayley took a quick shower and another where she was admitted to intensive care after a routine cleft palette check revealed she had aspirated, Hayley and Michael know they can’t let their guards down.
Grace gave them a scare in the days after she was born when she went blue and limp in her father’s arms and had to be airlifted to hospital.
“You just feel sick. There is nothing you can do,” Hayley explains. “You just see this little innocent person and you can’t do anything, I was just so upset but at the same time trying to keep it together.”
Hayley has penned an emotion-filled letter that gives others a powerful insight into what mums of babies with PRS face on a daily basis, in the hope that it would not only raise awareness for the condition but also stir others to offer support and a listening ear to mums struggling with sick bubs.
This is a letter I have written to myself and thought I’d share it, so here goes….
It’s days like today that I grieve for a ‘normal’ baby. I am extremely grateful that my baby is alive and beautiful and I wouldn’t change a single thing – life just sucks today, and that’s okay.
As I sit and listen to other mums talk about sore nipples from breastfeeding and troubles settling their babies, or even the happiness they express when their child is eating, it’s times like these that I can’t help but feel a little sad – jealous even. I sometimes wish I too had those problems – not the problems of projectile vomiting at every feed, reinserting tubes (sometimes daily) and listening to every noise when my baby is breathing to make sure she is okay and not obstructing.
Instead I make sure her breathing isn’t compromised while she tries so hard to drink 10mls from a ‘special’ bottle. Making sure she still gains weight every week because of the energy it takes just for her to breathe. I calculate – to the exact ml – how much to feed my baby each day.
While you may go out with a nappy bag and a bottle- I go out with tubes, syringes, PH strips and a breathing monitor. I can’t travel alone with my baby in the car because if she stops breathing, then how will I know? Instead I put that responsibility on my eight-year-old and six-year-old. All the baby photos I take feature tubes and tape attached to her face.
You don’t see that I’ve cried all morning, dreading coming out with a tube-fed baby who has been unwell. Instead you see me smiling, with my makeup on and hair neatly brushed. Then when I go, after struggling with my baby while out, I quietly cry to myself – just because that was hard.
While you glance over to me tube feeding my baby girl, not being able to nurse her because I don’t have a free hand, you give me a sympathetic smile which makes me just that little bit sadder.
Don’t get me wrong, I wouldn’t wish an unwell baby on anyone and I am thrilled that yours is happy and healthy, but for us, we just feel that little bit more isolated. My days are filled with appointments, tube feeding schedules and the extremely fine line I walk between starving my baby enough to eat but still ensuring she puts on enough weight for surgery.
At night you will snuggle up to your husband after a long day with your baby, while I sleep in a separate room to mine, listening to my baby’s breathing. This will be the way it is for the next two years.
Even though life has dealt us this card twice, it’s days like today I don’t want to hear ‘things happen for a reason’ or ‘this will only make you stronger’ or ‘life only gives you what you can handle’. While they may seem like the right things to say, all I want is a listening ear and for someone to say it’s okay – it’s okay to feel the way I feel. And some days life just sucks.
How you can help parents of sick bubs
It can be hard to know the right thing to say or do to help support a parent of a sick baby, but Hayley says there are a couple of simple things that you can do that will really make a difference.
Try and understand how hard it can be in their position, ask questions, listen and emphasise. “I may go out and my hair is brushed and my makeup is done but then I get home and it can all just go to crap,” she says. “I just really want people to try and understand how hard it can be behind closed doors.”
The best thing anyone can do for another parent is offer practical support when they seem to be struggling. “Just saying, ‘Hey do you need a hand,’ can make all the difference, ” she says.
Avoid cliche lines like ‘things happen for a reason’. “I know people mean well but I really hate it when people say ‘ you’ve done it with Amelia, at least you know what to do’ because it is different again,” she says.