Meagan Holt is a portrait of strength—she’s lost multiple babies and her two-year old daughter, Madeline, was diagnosed with Zellweger Spectrum Disorder—but she continues to advocate. Meagan served as the 2014 ambassador for the Snohomish (WA) County March of Dimes March for Babies, organized a candlelight vigil for parents who have experienced pregnancy and infant loss, and volunteers at the hospital where Madeline was born. Here is her story:
You’ve had some heart-breaking challenges on your journey to becoming a parent. Can you tell me about them?
My husband and I have experienced three late pregnancy losses: a stillborn baby at 21 weeks, another stillborn at 19 weeks, and a 30-week-old son, who had Zellweger Spectrum Disorder and lived for just 18 hours. Then there’s our sweet Madeline who was born at 28 weeks, weighing just 2 lb. 3 oz.
Did Madeline experience any difficulties when she was first born?
Madeline had no problems related to her prematurity, and wasn’t diagnosed with Zellweger Spectrum until a few days before her first birthday.
What are Madeline’s symptoms?
Madeline is completely blind but maintains some light perception. She is also legally deaf. To her, normal voices sound like a quiet whisper. She has a Gastronomy tube (G-tube) and is strictly tube fed as well as being severely Vitamin D deficient. Madeline also has a fatty liver with elevated enzymes. She has a large fontanelle (soft spot) and very little hair.
Despite these challenges, what are some of the things Madeline can do on her own?
She can sit supported, hold up her head, and use her hands to manipulate toys. She is also signing! She continues to baffle her doctors with how much she is continuing to make positive progress.
You’re clearly proud of her accomplishments. What do you attribute them to?
Madeline is such an amazing little girl. It’s really hard to put into words just how miraculous she is. She is extremely aware of her surroundings and if you didn’t know her, you would have no idea she is blind. My husband and I believe Madeline has done so well because we don’t pity her. We never tell her she’s different—only that she’s special. We challenge her every day.
What else amazes you about your daughter?
Madeline has a food aversion from struggling to eat for so long (she hates to swallow food), but she as no other sensory issues. She rarely cries. She is always happy and cooing. Madeline truly loves life.
What has Madeline taught you?
Madeline has showed me how to stop and enjoy life. When you have a child living on borrowed time, it teaches you to appreciate everything. I was devastated when we learned her diagnosis. How could this happen after everything we’ve gone through before? I struggle with this thought daily, but remind myself that every moment is precious, and therefore we celebrate her every day.
After your early losses, and Madeline’s diagnosis, were you hesitant to have another baby?
After Madeline’s diagnosis, I decided to have my tubes tied. When I went into the doctor to start the process, I found out I was expecting again. Olivia, our newest addition, is only a carrier [of a gene mutation that causes PBD-ZSD]. She was a fairly easy pregnancy.
What would you say to parents who are considering having another baby after having a child with Zellweger Spectrum Disorder?
I would tell other parents to have hope. It sounds silly, but hope is what got me through every loss. Hope got me through the three long hours of holding my son before he went to Heaven; through the first three months Madeline was in the hospital, through Madeline’s first illness (rhinovirus); and when she was hospitalized due to lack of oxygen and fever. Hope is how I live—hope for treatment, for a cure, for research, and hope for one more day.