5 Things All New Parents of a Baby with Down syndrome Should Know — Mainly, It’s Going to Be Okay!
I recall a lot…I mean a lot…of irrational fears that I experienced in those crucial moments right after Everett was born and diagnosed. No mother deserves to be slapped in the face with the intense fear and guilt that I experienced in those immediate hours and days. If there is one thing I would like to accomplish with this blog (there are several, actually, but if I had to narrow it down to one…), it would be to ease the unnecessary fears that many new parents experience after learning of their new baby’s Down syndrome diagnosis. Everett received a postnatal diagnosis, but I would imagine those who experience a prenatal diagnosis might grapple with some of the same concerns and fears I address below. So, regardless of whether the diagnosis came before or after your baby’s birth, here are 5 things all new parents of a baby with Down syndrome should know.
- Your baby is adorable. Everett got a postnatal diagnosis, which means he was diagnosed with DS right after he was born. Our nurses and doctors immediately noticed some features that were prominent characteristics of Trisomy 21, and most of these specialists were convinced he had DS. But his appearance and these physical “markers” were the only indicators we could base his diagnosis on while waiting on the definitive karyotype results. I remember a lot of people scouring over his appearance and gawking at every possible “marker.” It concerned me, and I’ll have to admit – I wondered if anyone would ever think my baby was cute because they kept acting like these “markers” were abnormal. Well let me tell you…dare I say…those “markers” or physical traits that pointed to Down syndrome are the exact characteristics that many people fawn over now. Including me! As evident by the photos in this blog entry, Everett was a little doll as a tiny baby. And he still is. As he’s grown his “markers” have become more obvious, but these same “markers” are what make him the adorable little boy he is growing into. And I have no doubt he will be a handsome teenager, a dashing young adult, and a debonair grown man someday. Your new baby is precious too, and I am certain he or she will grow into a good-looking adult!
- You are not alone unless you want to be. This statement isn’t meant to be harsh, although it might read that way. People react to their babies’ diagnoses differently. Some reach out to other families and get connected with their local groups in the DS community, immediately. Others choose to privately make sense out of their child’s diagnosis by immersing themselves in information about Down syndrome and the details related to raising a baby with DS. Right after Everett was born and diagnosed, I recall lying in my hospital bed during some downtime, hinging on the verge of an emotional breakdown. I felt like no one understood the worries circling through my brain, the heaviness in my heart. I remember praying intensely for God to take the palpable loneliness from me. Soon thereafter my room was filled with nurses, doctors, family members, and friends, coming and going as they checked on us, brought us food and baby gifts, and showered baby Everett with love and attention. And although I wasn’t ready to reach out to other families in the DS community right away, I later found a great deal of solace and assistance by reaching out to my online mom groups. Take a look at a recent post I wrote that details some of my favorite information sources in the early days. Any new parent reading this particular blog entry can pick and choose from a variety of information sources (web-based and face-to-face) listed and described on this page.
- When you choose to reach out to people, you can’t make a mistake. After we left the hospital with our new sweet baby, we began to realize that we would have to explain Everett’s diagnosis to the rest of the world. Everyone chooses to do this differently. I think parents who receive a prenatal diagnosis for their baby have the upper hand on this one, as they have some time to think and craft a strategy for communicating this information. With a postnatal diagnosis, we didn’t have that luxury. We told close family members in the beginning and asked those family members discretely and respectfully share the news with the rest of our family. And we later shared the news with a few friends via email and text message. Some of these friends
became upset because we didn’t share the news with them in person, and/or we didn’t share the news with them immediately. Quite frankly, these friendships became strained at that point. I know a lot of parents choose to send out an email, post about it to all of their friends at once on social media or remain private and discrete about it in various ways (like we did). Despite our circumstances (upsetting a few people), I don’t think you can make a mistake when it comes to choosing a strategy for sharing this information. If friends and acquaintances respond harshly to your communication method, then they’re not good friends to begin with (and consider that as you move forward). I will say this, though – however you choose to communicate this information with your friends, family, and acquaintances – they will follow your lead. If you act excited about your new baby and accepting/supportive of their diagnosis…your friends and family members will respond in a similar way (they will also be excited and accepting/supportive). If you act shocked, hurt, and in need of support…I think people will respond in kind (they will act shocked, they’ll cry with you, and they’ll provide support). So, however you do choose to convey the message about your baby’s diagnosis, prepare for others to follow your lead. Downsyndromepregnancy.org has example letters that a lot of parents choose to use or tweak when explaining their new baby’s diagnosis to others. It can be a very helpful resource for new parents when your brain is fried and you just don’t have the time or energy to think about conveying a message to others in an appropriate and effective way. These sample letters are appropriate and effective, well-written, easily copied and pasted, and require less energy than crafting a letter from scratch. A great resource IMO.
- You did nothing to cause your child to have Down syndrome. I confess a lot of things on this blog. Here’s another one of those “confessions” – my kneejerk emotional reaction to Everett’s diagnosis was “it’s my fault.” I immediately blamed myself for that extra chromosome. “Why did I wait to have children so late in life?” (I was incredibly old at 34…lol). “Why did I put my career first, and children and family second?” “This is entirely my fault.” These and many other irrational thoughts surged through my head as I tried to make sense out of everything. I even blamed myself for taking the “wrong” prenatal vitamins. I went back and researched the ingredients and later determined that the prenatal vitamins I was taking, had the wrong kind of folic acid (and not enough), and that probably led to Everett having Down syndrome. “Why didn’t I research prenatal vitamins better before we conceived?” In summary, according to me, this was all of my fault – my fault for being so old and my fault for not taking better care of my body. And then I encountered a couple at Everett’s pediatrician’s office, who also had a new baby with Down syndrome. They were 17 years old – in the peak of their youth and physical health. And then I came across a story in the Bible. Sarah…you know of Sarah and Abraham…mother of all nations…ring a bell? She conceived and gave birth at 90 years old. 90!!! 90 y’all…those are some old eggs…just sayin’. And I seriously doubt she had access to top-notch prenatal vitamins with the exact type and amount of methylfolate she needed for a healthy pregnancy. Yet nothing in the bible indicates that Isaac was born with additional, genetic material because that simply wasn’t in God’s plan. Moral of the story on this one – you did nothing to cause your baby to have Down syndrome. So, step away from Google and stop looking for additional ammo against yourself. Others in the DS community may disagree with me on this one, but this is my blog and I’m all about giving God credit where credit is due (which is pretty much for everything all the time). So here goes – your baby has Down syndrome because God chose you. Straight up. And He chose your baby to have that extra squiggly little chromosome, which believe it or not…is going to make both of your lives incredible in ways that you cannot fathom right now. If God wanted you to have an ordinary baby, He would have given you one. But he wanted you to have an extraordinary baby, and with that comes an extraordinary trek as a parent (trust me on this one) and sometimes – extraordinary challenges. But ultimately, this isn’t just your journey. It’s your baby’s journey – and extra chromosome or not, it’s your responsibility to guide him or her along the pathway of life, the best way you know how as a parent. And here’s a final tip for the ride – buckle up. I’m only 3 years into this little tour, but I can tell you on this side of things – thus far, it’s the most mind-blowing trip I’ve ever been on. Mind. Blowing. And I’ve done some really cool stuff, been to some really cool places, and seen some really cool things. Nothing comes close to matching this. Nothing.
- It’s going to be okay. My dad said this to my husband within hours of Everett’s birth and diagnosis. They were talking about Down syndrome while watching Everett get weighed, measured and scrutinized in one of those little hospital bassinets. He looked at my husband, a brand new father and said, “You know everything is going to be okay, right?” And, as always, Dad was correct. Everything has turned out okay. Actually, everything has turned out more than okay. Everett has changed our lives for the better. And with every day that goes by, I get to witness first-hand how he changes the hearts and minds of those he encounters (also for the better). In the beginning, I was so worried about his health. First, it was his hearing (he failed those tests, multiple times until he turned about 3 months old). When we found out he had teeny-tiny ear canals filled with fluid (hence the failed hearing tests), we began to worry about that. But everything has turned out okay. Everett had a tonsillectomy at age 3 and he’s going on his third set of ear tubes soon, but we’ll make it through this next surgery just like we made it through the last several procedures. Other parents have more intense concerns right out of the gate, as their children may have heart, digestive or other serious medical concerns associated with Down syndrome. I know these parents. I interact with them and their children frequently. And guess what? I think most of them would tell you that the health challenges were extraordinary, and difficult at times…but everything turned out okay. And they would probably also tell you that they can’t imagine life without their precious child with DS, and they can’t imagine their child any other way. It may take you a while to get to this point (and that’s okay too)….but seriously, everything is going to be better than okay. God is setting you up for a remarkable voyage and He’s not going to abandon ship along the way. So, as best as you can right now, take the above advice to heart and, 1) Enjoy your new baby and shower him or her with love and affection, 2) Surround yourself with supportive, understanding people, 3) Respond to others about your new baby and his or diagnosis in whatever way you see fit, on your timeline, 4) Know that you did not cause this, it’s a part of God’s bigger plan, and 5) It’s going to be okay. God is more than able to take care of you and your precious family – He’s got this. And so do you. Congratulations on your new baby!
Jeremiah 29: 11 – For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
*Note – We are incredibly lucky to live near many loving, supportive family members. The above collage does not include every single family member that showered us with love after Everett was born. If you find yourself in different circumstances (e.g. far away from family and friends), please contact me at firstname.lastname@example.org and I will try my best to connect you with some local moms and dads in the DS community (if you’re up for that). We love nothing more than to cuddle these sweet new babies and help our fellow mamas.