One Mother On Her Son’s Down Syndrome Diagnosis

Written by Katie Hintz-Zambrano
9:00 am
06/08/15

Photos Courtesy of Christa Renee

When we profiled model Amanda Booth in a Pregnancy Style feature nearly a year ago, neither we nor she knew that the baby she was carrying would be diagnosed with Down Syndrome. Since revealing the news via Instagram, the stunning new mama, her husband, and their healthy 10-month-old baby Micah have taken their new normal in stride. “Our little man is so freaking incredible, I literally forget that he has DS. I don’t think about it, worry about it, or track his progress,” Booth says. “We just live our lives and he is our son. Maybe there will come a day that it’s more ‘apparent,’ but for now, that’s us.” Read her personal story below and find out how you can follow along with this inspiring family’s life and goal of spreading awareness and acceptance.

Did you know that Micah had Down Syndrome before giving birth?
“My husband Mike and I didn’t want to do any prenatal testing, because to us, the results wouldn’t have changed anything, so why bother with the stress. During the 20 week ultrasound, a lot of measurements are taken for various ‘tests’ routinely, and they didn’t indicate anything was out of the norm. Many babies with Down Syndrome have heart defects, and we were very fortunate that Micah was not born with any heart abnormalities, again, resulting in no suspicion in utero.”

How was he diagnosed?
“A few hours after I gave birth, the staff pediatrician gave us a visit, as they do. She blurted out that she suspected he might have Down Syndrome and suggested we do a blood test and echocardiogram. We did the echo, and his heart looked great, so there was no immediate ‘concern’ or need to take four vials of blood from my newborn. The only exterior markers that she saw that caused concern were almond-shaped eyes (which my husband has) and folded ears, which could have also been a result of growth restrictions that he faced. At three months old, we decided to test again per our pediatrician’s recommendation to ‘rule it out.’ Being that we didn’t have major concerns, it was a big shock. But at the same time, it was something I think we accepted months ago in that hospital room. I was scared, of course, I hadn’t ever known anyone with the syndrome, and didn’t know any actual truth about it, just thought of all the scary possibilities my little baby might face.”

Have those initial feelings changed over time?
“Every single day that goes by, the diagnosis fades away to the background, and my boy is just my boy. I know it sounds ‘cool’ to say that you don’t believe in labels, but I honestly don’t and never have. We are all people who are so very different and function and think very differently. My son is not excluded from that. My husband has been a big support. He’s been so strong throughout everything, never once wavering, and it’s been a big influence on my sensitive mama bear heart.”

Do you have any advice for mothers of babies with Down Syndrome? We noticed you shared a tip via Instagram about feeding Micah with a milk storage bottle, since his hands are on the smaller side.
“I’m just starting to dive into the community. Being that we didn’t find everything out until pretty late, we’re still new to all of it. I am very grateful for social media for this time. I’ve been able to connect and follow the journey of other little ones with the syndrome. It’s shown me how incredibly ‘typical’ these babies are, and how lucky we truly are to be blessed with the love from their hearts. I’ve just naturally come into little things that I feel work best for Micah. I’m not sure that they have anything to do with Down Syndrome, but just me listening to my baby like any mama would do. He had a hard time taking a bottle, so I tried to think of ways to make him more comfortable, since nursing was such a comforting thing. No one likes anything big, scary, and new! So, I thought if he could cuddle up with the bottle, maybe he would take it when he was ready. Sure enough, he did! I also had heard (much after the fact) that babies with DS tend to have a hard time with feeding because of the lax muscles in their tongue and swallowing issues. I realized I had been pushing the flat side of his spoon against the top of his tongue while feeding him. It just made sense to me to be a way to help him feel the food, keep it in his mouth, and therefore swallow. So far, we don’t have any feeding issues! I also try to let him drink smoothies from a straw. Since they’re thicker and harder to suck up, I thought this would help with his mouth muscles as well, and hopefully one day it would help with his speech.”

Did doctors prepare you for any special issues that you’d have to deal with as the mother of a baby with DS?
“No one prepared us for anything at all. No one told us how life would be, or what to expect. Honestly, I’m pretty grateful. Again, I believe no child is the same and we wouldn’t want to put Micah in a box. We let him lead the way and treat him no differently than we expected to treat our baby. We just have more doctor appointments and monitoring to keep up with.”

You’ve become such an amazing spokeperson for causes related to DS. Are there any organizations that you particularly love?
“I hope my involvement in the community can grow so much more. This syndrome really needs a voice! So much is changing about it generation by generation and people need to not be afraid! I’m just starting to navigate, but have found a few organizations that I love! Ruby’s Rainbow is a program that gives people with DS college grants. Reece’s Rainbow is an organization that raises money to aid in the adoption of all babies with special needs. Reeve’s Tees is a t-shirt company that spreads the word of acceptance. I can’t wait to get even more involved!”

Any great books, websites, or other resources you’ve found helpful?
“It’s going to sound crazy, but using Instagram to find other families with similar paths as ours has been so helpful! I watch other babies grow and reach their milestones. Micah also has an occupational therapist who visits once a week. She has been a great recourse with just helping us track Micah’s individual millstones and progress, since that’s really what it’s all about. He’s done things very differently thus far than the internet said he would!”

How has it been balancing your modeling career with caring for Micah?
“It’s been a really big challenge. Far greater than I ever imagined! Micah is just thriving, and I feel such a responsibiltiy to be connected at the hip so that he keeps growing and learning! My mother moved to California after hearing of the diagnosis, so she is here helping us. I have to start taking more liberties with work, it will be best for the both of us…it’s just so hard!”

What are your hopes and dreams for Micah?
“My hope is that he realizes he can have any dream of his own! I can already see that he’s a stubborn little lad. I know that he knows he’s going to have to work a little harder than most at certain things. It just means that we will all appreciate every moment so much more.”

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To follow along with Amanda and her family’s story, check out their Instagram feeds here, here, and here.

Leave a Comment

34 comments

Wing

Congrats! People with Down Syndrome and often wonderful people who will teach you many important things in life – how to slow down n savour life as it passes u by, how to laugh n giggle at even little things that the intellectuals take for granted (and that kind of laughter gives the “intellectual life” a totally new dimension!), patience, affection, love and joy (even in the darkest moments, the joy that emanates fr a person w DS is contagious). Micah will be wonderful, and you be a far better developed adult w Micah in yr life. We have 4 children and Joseph is my youngest who has Down Syndrome. He is 14-yrs old and is still teaching me many more important things about life.

Pennerstorfer Christian

Hello Amanda! My name is Pennerstorfer Christian and I am football coach for people with disabilities and Down syndrome. We train free in the 1. Austrian Bundesliga and organize football camp in and abroad for children with disabilities and Down Syndrome. I would be glad to welcome you as an ambassador.

Carlos

Your child is beautiful, I am one more father of a DS child, her name is Anna, and we knew it before her birth. All the doctors were shocked with our intention of going on with the pregnancy, it is something that nowdays I can not understand.
My wife, Laura and me we think is the greater thing we have ever lived, she had opened our eyes for other faces of humanity.
Every day we are more proud of she.
Anna is 13 years old, she is studying in a school, in her class she is the only girls with DS and everybody loves she.
Congratulations and thank you for your testimony.

Micah, bambino con la Sindrome di Down sulla copertina di Vogue :

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