Just two weeks after finding out she was expecting a baby with her husband Chris, Amanda Bernier, 29, was given the devastating news that she had Amyotrophic Lateral Sclerosis (ALS) – a progressive neuro-degenerative disease that causes muscle weakness and paralysis, and ultimately the inability to swallow or breathe.
Only weeks before being diagnosed, Amanda – who worked as a firefighter and emergency first-aid responder – had been running competitively and leading a very active work and personal life.
The terrible disease had already claimed the lives of both Amanda’s mother and grandmother, as well as other family members, and sadly, as there is no cure or treatment, Amanda knows she is going to die.
Amanda gave birth to her baby daughter, nicknamed Peanut, by C–section at 39 weeks, with her doctors having no idea if she would survive the surgery and get to meet her little girl.
But Amanda was determined to not only live to see her daughter, but to breastfeed her and love and care for her like any other mum.
Sadly, Amanda’s illness means she can’t change, bathe or dress Peanut. In fact, breastfeeding is just about the only thing she could do for her little girl. “As a first time mum, and one that is paralysed, I was very concerned that she would not know who I was,” she says. “I could not soothe her when she cried, change her diaper or clothes.”
But, as many of us know only too well, breastfeeding isn’t easy, And Amanda struggled. “Nobody knew if I would be able to,” she wrote on her Facebook page. “My doctors could not find any case studies. The nurses knew how important it was to me to breastfeed. They were determined to help me.
“We persevered. There was no doubt in my mind that my body could create milk. Just like most mothers, I experienced painful, cracked nipples. Peanut would whip her head around every few minutes, never remembering to let go first. For about a month, I had milk blisters. My tube-feed calories decreased which ended up dramatically decreasing my milk production. I was never able to recover from that.
“My family was shown how to position and latch the baby on me before coming home a week later. I can only imagine how awkward it was for my aunts to touch my breasts but they did it out of love for my daughter and me. They would prop her into position by using pillows and blankets.”
And now that she’s finally established breastfeeding – something not every mother’s able to do, of course – Amanda’s new mission is to build up a supply of milk for her baby to drink when she dies.
“A very important goal of mine was to freeze as much milk as I could so my daughter would still have breast milk when I was no longer here,” she says. “So I began to start pumping right away. The challenge was how to use the pump not sitting upright. After some trial and error we found a method… I’ve filled the freezer with milk.”
Amanda also movingly describes her fears that her little girl would not realise that she was actually her mummy, rather than just her feeder, but says that she and Peanut are connecting more and more each day.
“Over time I found ways to connect,” she says. “I would play her Disney songs, play animal sound games… Now I know that she knows who I am and that she loves me. She waves and points to me when she is near. She will look at me when someone says ‘wheres mommy?’ The best thing is when she gives me her huge smile when seeing me after she wakes up.”
What an amazing woman – you can read more of her desperately sad but hugely inspiring story on her website and Facebook page.
Picture: Amanda’s Angels/Facebook