“I can still remember the scene clearly, as if it was yesterday. We had just gotten done with our ultrasound and the doctor had come in to talk to us about the results. We found out a couple of weeks earlier, via my blood test, Arabella had a 98% probability of having Down syndrome. The ultrasound was a nuchal translucency (NT) test and was being completed to help confirm the diagnosis of Down syndrome. The doctor’s words hit me like a ton of bricks: Baby Arabella’s NT test was consistent with a Down syndrome diagnosis. But I was relatively prepared for that. What I wasn’t prepared for was hearing that she also had fluid surrounding her neck, stomach, and head, a condition called Hydrops.
I immediately started to sob and was overcome with grief and despair. I knew the odds were greatly stacked against us and I would most likely never get to meet my baby girl earthside. We were sent to a high-risk obstetrician and came in every 2 weeks for a new ultrasound to see if her little heart had stopped beating yet so we would know when it was time to deliver our stillborn baby. Subsequent ultrasounds showed the fluid buildup worsening, now spreading to her heart, lungs, stomach, and down into her extremities as well. They were also seeing heart defects on the ultrasound. She most likely was in heart failure. Baby Arabella was given an ultimate 5-10% chance of being born and surviving birth afterward. Until a miracle occurred: at around 20 weeks, the fluid was completely gone and no serious heart defects appeared.
Our baby’s name is Arabella Eun Sook Kim. Arabella means ‘yielding in prayer.’ We had countless people praying faithfully for her. Her middle name is after my mother-in-law’s Korean name; she recently passed away from cancer. So this name is full of meaning for us. She arrived on July 17, 2019, at 12:28 p.m. weighing in at 7 pounds, 1 ounce. The Neonatal Intensive Care Unit (NICU) doctor met with us in the hospital as I was in labor, preparing us for the 50% chance Arabella would end up in the NICU following delivery due to the need for oxygen, feeding difficulties, or any other issues. But this baby came out strong and defying all odds, and she was my easiest delivery out of all three of my babies. They were able to immediately lay her on my chest (instead of rushing her over to get vitals on her like they did with my two other typical kiddos). There was no need for the NICU, no need for supplemental oxygen, and she was able to even latch and breastfeed almost right away.
The moment I first held her in my arms, I was overcome by her beauty and overwhelmed with thankfulness. And my fears concerning Down syndrome melted right away. I was just grateful she had come safely and healthily into this world.
To be honest, when I had received the news our unborn baby girl had over a 98% chance of having Down syndrome, I was devastated and afraid. I knew little about this condition, even though I was a Registered Nurse. All the things I read about Down syndrome seemed to be negative things that scared me, and I had many preconceived ideas and stereotypes of what this entailed. Never did I imagine this could happen to me. This was something that only happened to other people. I even would feel pity for the mothers I would see out and about who had children with Down syndrome.
What was my life going to be like? I didn’t want to be the mother of a special needs baby. I was already so tired. (We had faced many feeding challenges with my other two kiddos. My son even had an NG feeding tube in for the first year of his life, and I have Chronic Fatigue Syndrome.) I was worried I wouldn’t have the strength, energy, and patience for this. Sometimes, I even thought my life as I knew it would be over with. But I knew no matter what, I was going to give this baby a chance. I chose to surrender my worries to God and have hope that all would be okay.
If only my self back then could have fast-forwarded ahead to the day Arabella was born and to the present. Because then, I would have been able to see there was nothing to be afraid of and that my life would actually be infinitely better because of Arabella being in it. She is one of my life’s greatest blessings and now I understand why the term ‘the lucky few’ is used so often in the Down syndrome community. There aren’t many in the world who have a loved one with Down syndrome, but those of us who do are lucky indeed.
I’m sure other moms who see me out and about feel sorry for me, just like I had done myself. But please, please don’t feel sorry for me. I am lucky and thankful to have Arabella and I wish others could experience the love I get to experience. Never did I imagine having a baby with Down Syndrome would be one of the best things to ever happen to me. Arabella is a ray of bright light who brings me endless joy. I call her my Gentle and Beautiful Soul. But don’t get me wrong: this little one is a fighter and has a streak of feistiness and tenacity to her. She is smart, strong, and absolutely incredible, and I honestly wouldn’t change a thing about her.
I feel passionate about showing that an individual with Down syndrome is beautiful, amazing, and just as worthy as you and me. Down syndrome is not something to be feared. I want to change society’s perceptions of what Down syndrome is really like. Today, people are more often seen as less than desirable just because they have an extra chromosome. Society says their lives will have limited possibilities, they will be a burden, and their lives will all look the same. Most are not even given a chance of making it into this world to show what their life could be like. The majority of pregnancies (around 67% in the U.S. and 90% in the U.K.) are terminated when a Down syndrome diagnosis is made. Most times, the only information provided for the parents upon whether to terminate or not is given by a doctor who has likely never even met somebody with Down syndrome or a cold, sterile pamphlet filled with possible complications a person with Down syndrome might have.
When Arabella was born, I started an Instagram account to share her story and our family’s journey. Through this account, I want to show an individual with Down syndrome is worthy. I desire to inspire and offer hope. I want to show that each child with Down syndrome is unique and the possibilities are endless. They should not be placed into a box or categorized or limited based upon diagnosis. I want to show the reality of a life with Down syndrome. Although some things may look a little different, it will probably seem pretty typical and familiar to you. We show the life of a family with three small kids, which as you can imagine is oftentimes messy and crazy, oftentimes fun and silly, sometimes filled with challenges, but altogether beautiful.
It has been amazing and touching to be able to connect with other parents who are receiving a prenatal or new Down Syndrome diagnosis. I am able to reassure them they are not alone, that I myself experienced many of the feelings that they are going through, and that life can be beautiful even if this diagnosis did not fit into what they had pictured.
Several months ago, I also decided to start #OnesieWednesday, where every Wednesday I feature a statement onesie I make for Arabella myself. Through these onesies, my hopes are to shout to the world how wonderful and worthy she is, give her a voice, spark conversation, and help to ultimately lead to the acceptance of Down syndrome. I am also in the process of starting another project. I am wanting to create a way to connect with parents who are receiving a prenatal diagnosis of Down syndrome and letting them come meet Arabella in person (when this whole pandemic is over with!). Then they can make their decisions after having actually met a person with Down syndrome in real life.
To any parents out there receiving the diagnosis of Down syndrome for your baby, please don’t be afraid. Your life is about to get better. You are going to experience one of the purest and deepest of loves you could ever imagine. Your baby will be a tremendous gift and blessing. You, too, will consider yourself lucky and come to understand what that means. For all others, take the time to really get to know an individual with Down syndrome and see them for who they truly are, and not just a condition or a stereotype. They are amazing and worthy, and we have so very much to learn from them.
I recall a phone conversation with my brother back when we had received the positive news Arabella’s Hydrops had gone away completely. His words were, ‘I am excited for you,’ and he ‘couldn’t wait to meet her.’ I was extremely touched by his words and that is how I feel now. I am so excited to see who Arabella becomes and how she will positively impact and change the world around her. I know she is here for a reason and has an incredible purpose just by being who she is. It is amazing to see how she is already a light in this often dark world and has already impacted others for the better in her short time here. I am so very proud of her and I am so very lucky to be her mama!”
This story was submitted to Love What Matters by Tiffany Kim from Phoenix, Arizona. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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