It’s the moment moms look forward to—your new baby is placed on your chest and she squirms around before latching on.
But Amanda Bernier wasn’t sure she would get that moment. Two weeks after she found out she was pregnant, she was diagnosed with the most aggressive form of ALS—the disease that killed both her mom and her grandmother.
Doctors weren’t sure if Amanda could carry to term because of the rapid progression of the disease. After just five months, she was paralyzed from the neck down and on a ventilator. And as much Amanda wanted to breastfeed, there were no case studies of women with ALS being able to.
But Amanda was determined, and she delivered a healthy baby girl named Arabella who she was indeed able to breastfeed.
This photo of mom and baby just fills me with so much love. But also a deep heartbreaking sadness.
Amanda shared in a Facebook post that she’s had a challenging breastfeeding journey.
Like most breastfeeding moms, Amanda has had to deal with cracked nipples. But she’s also had to deal with the fact that she can’t hold her baby to breastfeed. Instead her family has had to learn how to position the baby and her breasts so Arabella can feed.
“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,” Amanda wrote.
Amanda and Arabella can also never enjoy a peaceful moment of just mommy and baby gazing at each other. For safety reasons, someone always has to be around when Amanda breastfeeds. So instead of gazing at mom, Arabella is always distracted and looking at whoever else is in the room.
When the baby started biting during feedings, Amanda had to stop breastfeeding because she has no startle reflex, so Arabella doesn’t realize her biting is hurting her mom.
Now Amanda exclusively pumps—which is still quite a challenge thanks to painful nipple callouses.
“I delay taking my pain meds so that I don’t have to pump and dump. I can’t take care of my daughter, but I can give her the gift of breast milk. I will continue on until my body no longer produces,” Amanda writes.
Since Amanda doesn’t know how much time she has left, she is pumping all the time so she can freeze enough breast milk for her sweet baby girl.
“Two people hold the breastshield (cups) on my breasts,” Amanda wrote of her pumping process. “When they get full, an oral syringe with a pediatric ng tube is used to suck the milk out and is dispensed into a bottle. I was fortunate to fill the freezer with milk.”
I’m humbled by Amanda’s determination to give her daughter everything. My heart also aches for her. I can’t imagine having the strength to get up everyday and battle not only ALS, but all the challenges that come with being a new mom.
But more than that, I can’t imagine having to get up each day and know I’ll soon have to leave my baby girl.
“Having ALS is not how I pictured my life. It breaks my heart that I can’t be the mother that I wanted to be. It crushes my soul that she won’t have her mother for much longer and she will grow up without me. However, everything happens for a reason so I am glad that I will be by her side as her angel.”