Kidspost - Published February 2020
Mum of premature baby founded NICU Cheer to support other parents struggling.
Jenna Martin, Kidspot.
Published 26 February 2020
Photos: Aaron Francis (Ashton's Dad: @afrancisphoto)
Maddie Francis knows the sights and sounds of the NICU all too well. She knows what a confronting - and isolating - place it can be.
In 2016 her son, Ashton, was born prematurely at 30 weeks after he stopped moving in utero. "I just knew something was wrong," she tells Kidspot. "They kept trying to send me home. I refused."
The nurses finally realised that Maddie was right and her baby wasn't responding as he should. She was told to quickly call her husband while being prepped for an emergency caesarean, 18 hospital staff members at the ready to help bring her baby boy into the world and try to save his life.
Now three years old, Ashton is strong and healthy but his early medical issues still linger. He has multiple hospital and specialist visits to get on top of fatigue, brain bleeds, and other developmental issues. And Maddie's memories of the NICU are as strong as ever.
She says they have no idea what it was that caused Ashton to stop moving. "They took my placenta to be autopsied, they checked me over and Ashton was tested too. Everything was fine. They said we will just never know." What Maddie does know is that if she'd waited at home, as requested, things would be very different. "The doctor told Aaron that if I'd listened to medical advice, he definitely would not have made it out alive."
Maddie's experience of the NICU led to the creation of NICU Cheer, a charity that provides hampers and gift packs to parents in hospital caring for their premature babies. "I had heard about a number of premature support organisations after we'd left the NICU who supposedly help every premature family," she says, but added, "I received nothing at all in terms of support... no flyers, info, etc... I'm not suggesting it doesn't exist, I just know that if I was there for nearly seven weeks and didn't hear a single thing, then others must be falling through the cracks too."
Maddie says she felt compelled to do something to remedy this. "My first Christmas after having Ashton I was so aware all day how extra upsetting and traumatising it must be to be in there on such a special occasion, away from family, loved ones and all the celebrations," she says. "That is why I started NICU Cheer - to cheer up parents on Christmas Day and to let them know they're not alone."
The initiative has now expanded to include other special events like Mother's and Father's Day. Each NICU Cheer bag includes things like quality toiletries from companies like Aesop and Sukin, lots of snacks for those long NICU nights, quality baby clothing, feeding supplies and cot bedding and premature specific milestone cards like, "I had my first cuddle with Mum today", along with dozens of other beautiful, necessary products.
Maddie says there are plenty of ways friends and family can help NICU parents. "First and foremost," she says, "Bring the family food so they don't have to think about cooking after a long, draining day in the hospital."
The other important thing is to always congratulate them on the birth. "So often out of fear of being insensitive people only say things like, 'we're so sorry'... we hope you'll all be OK,' which is lovely, but those people have just become parents. They are already missing out on so much of the good stuff that comes with going to full term with your pregnancy, so don't deny them the congratulations - their baby is here and although they are tiny and/or sick they should be celebrated."
"I found my first weeks in the NICU extremely isolating," she says, "Friends can't visit, even family is restricted in the NICU. The other mums are in zombie-mum mode shuffling to and from their babies' cots... I made a conscious decision to make friends with my fellow mums and it is my number one tip now to any new NICU mums."
Like the ultimate mother's group, Maddie says "the group of women I went through the NICU with got me through so many scary moments and continue to get me through today, years later... Being a NICU mum is a bond like no other. Your friends - no matter how close - just can never fully grasp how traumatising it is being in a place like that for so long watching your baby struggle to survive."
Maddie says carrying her first child to term made her more confident in trusting her gut when she knew something was wrong with Ashton. "Nobody knows your body or your baby better than you," she says. "Most medical professionals are wonderful and I don't want to put them down for a second. But I knew something was wrong with Ashton."
She adds, "When the doctors tell you all is well, but you strongly feel it is not, it is perfectly OK to ask for a second and
third opinion. I understand some mothers do worry about absolutely everything, but often mothers know long before tests can prove it, that something is just not right."
She says that even now she still feels guilty sometimes for not doing more for Ashton earlier. "Then my husband jumps right in and snaps me out of it, saying, 'there is no doubt in my mind you saved Ashton's life... your mummy gut saved his life. We would not have him without you."
You can learn more here or visit NICU Cheer on Instagram and Facebook .
