Happy World Down Syndrome Day! I can hardly believe that we have been celebrating this day for four years. Our surprise baby is growing up far too quickly!
People often question why we celebrate something that causes widespread fear. The truth is, you can never really understand something until you live it. We've been on this journey for 3 1/2 years, and I can honestly tell you it's nothing to fear! Today, we are celebrating the beauty of Down syndrome and all of our fellow human beings who are rocking an extra chromosome, including our beautiful son, Liam!
Many of you were reading my blog when I was pregnant with Liam, and were there for the shocking announcement after he was born. There are some new readers, so for those who are interested, you can read the full story HERE.
One of the things that surprises me the most is how many people reach out to me after finding my posts on Pinterest. Emails and questions come in weekly, and one of my favorite things is helping the scared moms who are beginning this journey. I was that scared mom once, and I love being able to give them some hope!
I firmly believe in open conversation about Down syndrome, so I do my best to answer every question that comes my way. Sometimes people feel awkward and are afraid to ask, but I welcome questions and love to discuss it. In honor of World Down Syndrome Day, I'm sharing the most common questions I receive about Liam, a Down syndrome diagnosis, and life with Down syndrome.
Did you know before birth?
We had NO idea! We were told our baby was textbook perfect, so that's exactly what we expected. To say we were surprised is an understatement! I had no idea that a birth diagnosis is actually quite common.
When did you find out the news?
Right after Liam was born, two of the four doctors in the room suspected Down syndrome while the other two did not. There was some debate between them, but they decided he needed to be thoroughly examined and they ordered a blood test. We were supposed to receive the results in 24-48 hours, but we ended up taking our newborn home without any answers.
Every single day I called, and every single day I was told they were having trouble getting accurate results. As the weeks went by, we began to worry that it was something worse. Finally, when Liam was nearly a month old, his pediatrician had enough. She called the lab on the spot and demanded answers within an hour.
One hour later, I received the phone call. As I cradled my tiny 3 1/2 week old baby in my arms, I listened to his doctor confirm the news that I had known since the moment my eyes met his for the very first time.
How was it missed?
Down syndrome was not detected during the initial blood screening or in all the ultrasounds that followed. Just like his two sisters, Liam had a white spot on his heart which can sometimes be a soft marker for Down syndrome, but that's almost always present with other markers, which are spotted during ultrasounds. Every ultrasound showed a perfectly healthy baby with normal measurements.
Even if we HAD known, it wouldn't have changed anything. We just would have been better prepared. Our chances of having a baby with Down syndrome was 1 in nearly 900. Just let that sink in! It's obvious why it was never even on our radar. One important thing to remember is that unless it's an amnio result, prenatal screening is not fail-proof!
Aren't you too young to have a baby with Down syndrome?
This one is a fair question, because I once thought the same thing. The fact that only older mothers have babies with Down syndrome is one of the biggest misconceptions! Although the chances of having a baby with Down syndrome increases with age, more babies with Down syndrome are born to mothers UNDER the age of 35! I personally know many teenagers, and first time moms in their twenties, who gave birth to a baby with Down syndrome.
Will it ever go away?
Many people confuse genetic condition with chronic illness. Down syndrome is a genetic condition and it will never go away. No miracle vitamin, pill, or magical therapy will take it away. Liam will always have that third copy of his 21st chromosome.
What caused it?
I think this answer scares people the most. In almost all cases of Down syndrome, it occurs by chance. There is absolutely no way to prevent it, other than by not having a baby. It happens by chance at conception, and nobody is exempt.
When Liam was conceived, I was young, healthy and fit. I exercised several times a week, ate a healthy diet and took a prenatal vitamin. I don't drink any alcohol, smoke, or take any pills other than the occasional OTC painkiller. I did EVERYTHING right. I couldn't have done anything to prevent it.
What was your reaction?
I can't sugar coat this answer in any way. I was devastated, and my feelings were UGLY. I can't even talk about it without feeling guilty. I didn't want this baby. All I wanted was the perfect baby I expected. I felt as if life as I knew it was ending, and we were doomed to living the rest of our lives in depression, secluded from the rest of the world.
What I soon found out was that every feeling I had at that time was justified. Thankfully, I started to accept our new normal within 24 hours and was able to move forward.
What surprised you the most about Down syndrome?
Honestly, how normal life can be. We are doing everything a "typical" family does and most days, we forget Liam even has Down syndrome!
What were your struggles?
Getting Liam to gain weight was incredibly difficult! He ended up hospitalized at two months old, because he was still under his birth weight of 7 lbs 11 oz. The doctors checked for every possible cause during that stay and they couldn't find a single thing wrong with him.
Liam was just high energy from the start. He rolled over at 3 weeks old and never stopped moving. (Just FYI, he still hasn't stopped!) He burned off more calories than he took in, and the result was a baby that was so scrawny. He didn't reach 10 lbs until after he turned 6 months old and even now, at 3 1/2, he's only 27 lbs. He's just a lightweight dude!
What do Liam's siblings think of him?
Dylan, Lexie and Lily adore him and they are so proud of him! They fell in love with him right away. We were open with them about Down syndrome from the start, and immediately started exposing them to the Down syndrome community. Watching them grow into compassionate, accepting, loving human beings was a beautiful thing. I can't even adequately describe the love that they have for Liam. It literally brings me to tears. The moments I capture on camera speak volumes about their love for each other. They are all so blessed to have each other!
Are you sure he has Down syndrome?
This question always makes me laugh, and it has even been asked by parents who have children with Down syndrome! I understand, though There are times when Down syndrome completely disappears from his face, and even I questioned it at times. Yes, we are sure, but we will never know for certain which type he has.
All of Liam's medical professionals believe he has mosaic Down syndrome, in which the extra chromosome is only found in a percentage of cells in his body instead of every cell. It's still Down syndrome, but the physical traits are less noticeable, there's usually a lack of health issues, and the delays aren't significant. It describes Liam perfectly.
In order to find out for sure, we would need to pay thousands of dollars out of pocket to get a test done that checks 500 cells for the extra chromosome. While it would be awesome to know for sure, it truly doesn't matter. Down syndrome is Down syndrome, and he's still going to have it whether that extra chromosome is in every cell or only in a few. The only thing that matters is that Liam is happy, healthy, thriving and completely rocking it!
I hope you learned a little bit more about Down syndrome today, and we hope you will join us in celebrating World Down Syndrome Day by wearing blue and yellow, and rocking crazy socks in support of those who are rocking an extra chromosome!
If you have any other questions, feel free to email me or leave them in the comments. I'm an open book!
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Justine at Full Hands, Full Heart