When Amanda Bernier found out she was pregnant she was elated, but the news that followed two weeks after brought her crashing back to Earth.
The 31-year-old Connecticut woman was diagnosed with amyotrophic lateral sclerosis (ALS) and her doctor told her she may not live long enough to bring her baby to term tells Today.
She defied that prediction and gave birth to a healthy baby girl, Arabella Grace, or Peanut as her mother calls her, 10 months ago. Now, Amanda’s health has declined rendering her unable to move and breathing only with the aid of a ventilator, however the brave mother continues to inspire people around the world with her fight against the debilitating disease.
Although the doctors could not find a case study of an ALS sufferer successfully breastfeeding, Amanda would not accept this as hers and Arabella’s fate.
“Just like I knew that I would deliver a healthy full term baby, I knew that I would be able to breastfeed,” Amanda told her Facebook group, Amanda’s Angels.
“As soon as I was rolled to my room Peanut was placed on my chest. I was blessed that she immediately knew what to do. The nurses that I had gotten to befriend over the past quarter of a year knew how important it was to me to breastfeed. They were determined to help me give that gift to her.”
Due to Amanda’s crippling condition, she was unable to feed her baby without help, and nurses and family members held her baby to her body while the child fed. She has since moved to exclusively pumping but Amanda still needs two people to hold the pumps while she expresses milk.
Courtesy of Amanda Bernier
Pumping milk has not made life easier for the mum who is educating people about what it’s like to live with ALS.
“Now that I am solely pumping my nipples are starting to get calluses,” Bernier wrote on Facebook. “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.”
“Moms say they would do anything for their child and I have had that opportunity to do so. I have done everything that I can to give her the best start in life,” Bernier said.
“I think because I see the good in everything, it reminds people that there are so many things to be grateful for.””Moms say they would do anything for their child and I have had that opportunity to do so. I have done everything that I can to give her the best start in life,” Bernier said. “I think because I see the good in everything, it reminds people that there are so many things to be grateful for.”
Although Amanda’s vision is to raise awareness for the condition while she is still alive, she also realises that she will probably die before her daughter creates lasting memories of her.
She is working to create these memories while she still can.
“As difficult as it is to know that I am dying sooner than I would have liked, and that my daughter won’t remember me, I came to terms with it after my diagnosis,” she said. “There is no point for me to be upset every day. … I enjoy each day, as it is a gift to be alive. I have tried to do as many things as I could think of to help Arabella know who I am.”
No one knows how much time Amanda has left, but she’s grateful to have been able to achieve her goal of breastfeeding her child as long as she is able. She is also happy that she has given others inspiration to continue breastfeeding if they have needed it.
Creating scrapbooks and journals, wiring letters and cards to be given on her birthday the mother is preparing for the day she must leave her precious daughter.
The ALS Ice Bucket Challenge went viral last year, with thousands of participants dousing themselves with freezing water to raise awareness, and money, for the disease.
Courtesy of Amanda Bernier
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