Celebrities and Down Syndrome

Celebrities, in my mind, become endearing when they use their notoriety to spread awareness, give back, and help others.  When I first became aware of the model, Amanda Booth, who has a son with Down Syndrome, I was curious to see if she was open to discussing her son.  Not only was she open to discussing his diagnosis, but as far as celebrities and Down Syndrome go, she is a forward thinker sharing his diagnosis with the world.

Amanda has been interviewed in Harper’s Bazaar, Parents Magazine, People Magazine, and she has done work with the Global Down Syndrome Foundation. She also shares pictures of her beautiful son, Micah, on Instagram.  When I got ahold of Amanda she was more than willing to allow me to interview her, I love her outlook on Down Syndrome and the fact that she is using her celebrity status to also draw attention to the beauty in Down Syndrome.

When did you learn of the Down Syndrome diagnosis?

We were presented with the idea that Micah might have Down Syndrome a few hours after he was born. The on call hospital pediatrician pointed out two markers (that he had almond shaped eyes, and his one ear was slightly folded). She suggested that we do genetic testing, but felt that he was too small for them to take the five vials of blood they were seeking. We opted to wait to test until he was three months old. A month later, is when we officially got his diagnosis of trisomy 21.

amanda booth down syndrome son

 How was the news presented to you?

The hospital pediatrician had absolutely no bedside manners. She just blared out right after introducing herself “I think your baby has down syndrome”. That was directly followed by criticism from choosing not to do genetic testing during my pregnancy. When we got the official diagnosis, however, the pediatrician that we choose for Micah came to our house to deliver the news.

What was your initial reaction?

In the hospital, initially, we thought they were crazy. He didn’t have any markers during the ultrasounds. Micah came out screaming and strong as a wolf – so I thought anyway. He didn’t have very many markers so we thought they must have been wrong. I guess at first I was just in denial. I was young, 28, I didn’t think it was really a possibility.

What were your initial fears?

When we found out for sure that he had DS, I cried, heavily. We had a unique situation. We were able to bond with Micah for three months pretending everything was “okay” and that he was just a typical baby. So when we officially heard that he had trisomy 21, we already knew who he was. I cried because in the instant because I thought “what if he doesn’t have friends? Will he be able to ride motorcycles with my husband as he had always dreamed? Can he talk? Will he feel valued?”. One million things ran through my head in one second. The very next instant our pediatrician said “I really do think that these babies are angels, everything is going to be okay”. I held my baby, looked at my husband who stood steadily, and it all vanished.

Did you know anyone who had DS before your baby was born?

I had never in my life, met anyone with Down Syndrome until the day my son was born. It’s strange though, now that I reflect. There were only two instances that I can remember ever seeing someone with DS.. I saw a boy in line at the airport and I felt like he really looked into me, I was pregnant. The second time was on the beach, also when I was pregnant.

 Did you worry about telling others?

Not even for a second! I am lucky that I have a supportive husband, and family. I didn’t have to “worry”. I also have made a career out of not caring about what people think, or have to say about me. My skin had thickened. I knew that it was our duty to use our platform to spread awareness for our baby, and what his life was REALLY like. Too many misconceptions are out there, even ones that at one point made us worry, and we had to tell the world it was different!

amanda booth celebrities and down syndrome

 Being that your career is based on personal appearance, did you worry more about how others would react?

It’s true that my job is really vain. That you’re chosen based on appearance. But really, what people don’t realize, is that you’re chosen because you’re different! I book work because my nose is crooked. I book work because my eyes are farther apart than usual. I guess you can look at it in many ways, but that’s the way I’ve always chosen to see it. I celebrate what makes me unique, knowing that I’d just fall in line with the thousands of other girls doing it if I didn’t. If you don’t stand out, you’ve got no chance. Micah just stands out, and I think it’s important to choose to see that in the right way.

 What was your biggest obstacle to accepting the diagnosis?

I think the hardest part for me, was accepting that DS is a genetic anomaly and I couldn’t have “done anything” differently. I was really active, and healthy during my pregnancy. I had zero vitamin deficiencies. I chose to have my child younger. All of those decisions I made to try and have the healthiest baby I could. In spite of it all, my child was born with a genetic condition. I didn’t do anything, but it’s hard to not feel responsibility.

 Did your baby have any health issues at birth?

We are so lucky, that overall Micah was (and is) pretty healthy. He spent a few days in the NICU for jaundice. He had really really bad reflux and would choke on his reflux and turn blue at times. Once we realized that and kept him upright with feedings, we were able to keep things down. He has hypothyroidism, so he takes medication every day.

 How was your birth experience?

I was planning an at home birth, that would have ideally taken place in a tub. I ended up being emergency induced at a hospital. Micah’s heart beat had been dropping during those last few visits with the midwife. That lead to a few visits with specialists to make sure that everything was okay. During one of the visits, we were told we had to go to the hospital right away. I didn’t feel scared, I was pretty excited that that meant we were so close to holding our baby in our arms!

We got to the hospital, not knowing much of what to expect since it was outside of our “plan”. When I arrived I was already 2cm dilated, so it seems Micah knew he was ready to be born! The doctor broke my water right away, and it was filled with blood. She said that it “didn’t look good”. My midwife assured me at this point that I would have ended up in the hospital no matter what (having seen the blood in my fluids), so it was good that we were already there. I was prepped for a cesarean, but they were going to let me labor naturally while monitoring his heart and hope that I could have a vaginal delivery as I hoped for.

A few hours later and we were into the night, so the doctor, and my midwife went home for the night, expecting I would be in labor for hours. Eight hours went by and I felt Micah was ready to be born. The nurse didn’t believe that I had gotten to 10 cm so quickly, but I did. I had to wait (i.e. hold Micah in) until the doctor got back to the hospital. 30 minutes later, and he was born. Overall, the whole process was pretty scary. I was on egg shells the whole time if Micah was okay. If I could get through it without pain medicine. If I would have to have a cesarean. A genetic diagnosis wasn’t even on the radar at that point.

How did daddy respond?

I feel like Mike was the rock throughout the beginning phases. I never heard him sound worried. I never heard him say “what if”. Nothing felt different. We had a baby boy, and that was that. It wasn’t until a few months after the diagnosis that I had to ask him to tell me if he was ever scared. I felt like I was a crazy person because he never seemed to waiver. He confessed that he initially had thoughts, comparing our lives to those of his friends with little boys, wondering if he’d be able to do the same things with him like he envisioned (ride motorcycles, surf, build cars…). But he felt it was his job to be the silent rock that I needed. And when I seemed to have my understanding and strength within the diagnosis, then he was able to let me know that I wasn’t alone – but that it didn’t matter because Micah was going to do whatever he wanted to do.

celebrities and down syndrome amanda booth

 How did the diagnosis affect your relationship?

Having a diagnosis hasn’t seemed to affect us at all! Having a child that requires a bit extra is the tricky part. And that can come in so many shapes of course. Just managing responsibility and time is tough,  but I feel like it’s always that way no matter what your kiddo has going on. Micah requires that you slow down, a lot. It’s been really amazing witnessing that change in my husband. It’s not easy for him, but I can see that he’s trying.

 How long did it take you to look at your child and not see DS?

I think this is ongoing, and will probably be so for forever. We didn’t have an official diagnosis for a while, so since the beginning, we spent weeks enjoying our typical baby. Then days seeing DS come out (his little hands, his eyes). Most of the time we forget completely. Then sometimes at a park, around a baby younger than him who is asking for more juice, I remember. I remember that he’s a little bit different. And I remember that again when he opts to run up and give me a hug, instead of throwing a tantrum like the two-year-old next to him. It doesn’t have to be a bad thing to see Down Syndrome when I see him, he does have it after all… But mostly, we just see Micah.

 Can you be honest about your initial feelings and share what they were? This honesty could be a huge help to new mamas so they know that all of us share some thoughts and feelings when we grieve what we thought we were having.

I was terrified. I was scared that he would get bullied, or taken advantage of. I knew nothing about DS and assumed based on the very little that I knew, that he wouldn’t be a functioning part of society, and what it would be like to care for a child for forever. Gosh, I remember crying so heavily, because I thought he would be sick, or die early. I can honestly, barely even remember the exact thoughts I had. I know I wept, and I know that I no longer weep.

What enabled you to move from learning the diagnosis to embracing it?

Just being one with my incredibly beautiful, smiley, warm and joyful baby! Meeting other parents out there, and feeling the strength within our community. Becoming aware of his actual medical needs, and tools we needed to help him thrive. And witnessing adults living with down syndrome today. celebrities and down syndrome amanda booth

How did friends and family respond and was their response what you expected?

I’m pretty sure both our families were just like “oh, okay”. Some sent books, which basically expressed how incredible babies with Down Syndrome were. Sometimes I’m the one who is like “hey guys, he has Down Syndrome, remember!”. I don’t get the impression from anyone that they think of him as different, at all.

How has your life changed?

In every way imaginable. Just as most mothers, I assume. Having a child is definitely the most incredible challenging, and wearing thing I’ve ever done. The fact that Micah has special needs compounds that, in that I need more patience, a bit more coffee, and I have to write more things down, because we have a lot to remember. Truly, I have gained more friendships, and a better sense of reality and the world since his diagnosis. I would definitely say the extra wrinkles, and slower functioning brain are well worth the little bit of extra.

 How old is your baby now?

Micah will be THREE on July 30th!

 Also, talk a bit about how you hope to use your own journey to help others.

I just hope that people keep seeing that we are just a family living our lives, and that that inspires others to embrace that different is beautiful. With my line of work, I think people are so focused on “perfection” and what that means. I think its really amazing that our lives are not what you would consider “perfect” conventionally. And even with that, here we are, living with each breath just like everyone else.

celebrities and down syndrome

Amanda Booth is a model and actress most recognizable from her commercial television work. She has appeared in advertising campaigns for Lancome, Fiat, Hersheys, Target, Old Navy and more. She has appeared on network television shows such as Hot in Cleveland, Maron, and Community. Shifting from fashion editorials for Italian Vogue, Australian Harpers Bazaar, and Elle, to most recently the cover of Parents Magazine. Her focus has now broadened since becoming a mother in 2014 to a son with Down Syndrome, to being an ambassador for Changing the Face of Beauty, and advocacy through social media. You can find her on instagram at @amanda_booth and follow alongside her son, Micah @lifewithmicah

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