*I have loved a couple great kids who had a Down Syndrome diagnosis. They have a special place in my heart. I’m glad to host Michelle and Amy’s thoughts on parenting a child with Down Syndrome as a way to celebrate Down Syndrome Awareness Month. These are kids worth celebrating.*
What was your first thought when you found out you had a child with Down Syndrome?
Michelle: Tullie was a 31 week preemie. We found out about her Down Syndrome (DS) diagnosis at birth. Our 20 week ultrasound showed no indication of DS and her early birth and her diagnosis were a surprise to us. My husband had gone up to the NICU (Neonatal ICU) with her after her delivery and while the nurses were looking her over and checking her out they saw the physical signs of DS-almond shaped eyes, flat nose, space between their big toe and the next, a straight line across the palm of her hand and low muscle tone.
Mike, my husband, came back to my room and asked a nurse to leave. I could tell he had been crying. He was trying to hold it together when he told me that the nurses believed that our daughter had DS. They told us that they’d do the genetic testing, but they were pretty certain that she did, in fact, have DS. When Mike told me my initial thought was, “She is NEVER going to leave the house.” Albeit, a selfish one, but that was my first thought.
There are many people I’ve talked to over the years who have said that they were just fine with their child’s diagnosis and I really don’t believe them. It’s too much of a life changer. It’s unexpected and it’s hard. My first thought, is a thought that I still have often, especially on a hard day. It creeps up and it pulls be down when I already feel kicked.
Those first days and weeks with Tullie are a blur. I remember feeling so overwhelmed and trying hard to act like I had it all together when really I had to allow myself to grieve and to love her. The first year was really a struggle of “saving face”. Do I say what I really think or say what everyone wants to hear?
Amy: My case was unique in that the pregnancy started as a spontaneous triplet pregnancy. At my 12 wk US it was discovered that the twins had passed away and the third baby had a thickened nuchal fold (the skin at the nape of the neck) just slightly out of normal range. I was given a high risk assessment and offered a blood panel, but the fact it was a multiple pregnancy could throw the results. Or an invasive procedure, CVS. Given that odds were high I’d lose the pregnancy anyway, we declined. My mind was clouded with grief and fear of losing our remaining baby, chromosomes didn’t really rank much in light of that. Besides, the probability of Down Syndrome seemed remote considering how much we had been already through. At 17 wks we were given a detailed anatomical ultrasound scan. Baby Girl #6 looked good to my untrained eye. The sonographer was pleasant and at ease. When she left the room, Jason and I felt confident we had dodged the bullet and gave each other relieved smiles. We then sat in a exam room and waited for an hour. It was snowing heavily in Seattle, so we assumed that was reason for the delay. But as time dragged on our tension grew. Two female doctors entered, one asking me to move away from my husband (sit on the exam table) and she took my spot next to him. It was odd. As the OB signed in the computer, my eyes strained to decipher a long handwritten list on the US report. I could make out ‘cord issues’, ‘possible bowel obstruction’ and a bunch of words I’d never needed to understand, but could soon hold life or death for my littlest girl. The OB was so very very sorry to tell us that, (long sighhhh, hand on my arm) our baby had several ‘markers’ that are consistent with what they see in babies with a trisomy defect, most likely Down Syndrome. She was so sorry. So sorry. Sigh. She exuded despair. A death sentence. She told us that many terminate these kinds of pregnancies. I gave her a shocked and sad smile and told her ‘it was okay’, as if to reassure her. I looked over to my sober faced husband. Maybe he would say something clever to make this all go away. He was stunned. ‘If I wanted an abortion, I needed to decide soon. We were nearly past the time. They could set up an amnio in 15 minutes.’ ‘I would only have a few more weeks to change my mind.’ Another tense smile and I heard myself say yes, I wanted to continue. The doctor next to my husband started to clarify something, and it became clear she was there to mediate between Jason and I, lest we not be in agreement on that issue. Normally, we would be immediately referred to the in house geneticist but she’d gone home early on account of the bad weather. We’d have to come back in three days. Did I have any questions? I asked if these issues she had could resolve, and they could, some of them, but that wouldn’t change the probability of a chromosomal defect. So technically we had an ‘unconfirmed prenatal diagnosis’. When we met with the geneticist, she was much more positive than I expected. I think realistic would be the word I would use to describe her. She knew we were pro-life, it was on file. Her first question took me back “how can I help you?” (‘tell me she is FINE!’ echoed inside my head) Instead we asked for the numbers. We had sooo many markers, like 5 all together, that we were in this remarkable group of 0.decimal percentages. I think it was a 0.66% odds that she didn’t have a trisomy defect. So, it was lots of very scary baby steps that led us to accept that she had DS, with very complex emotions. But mainly my first concern was that she would die, we were told she could ‘check out’ at any point, no matter how well things seemed to be going. It was hellish. I felt like a walking graveyard.
How did you make peace with the diagnosis?
Michelle: Tullie was on oxygen for the first 10 months of her life 24/7. She continued to stay on it until she was three years old for naps and sleeping at night. But her first several months were critical to her health. During the fall and winter months (she was born in June), we kept her and our oldest son home from church. Our church at the time had 3 services, and Mike and I would decide who would go in the morning and who would go at night, and then the other would stay home with the kids. Even though Tullie was with us during church there was still a risk of our older son catching a cold or some sort of bug in the nursery, bringing it home and then Tullie would catch it possibly sending her to the hospital. Anyway, one morning I walked into church and immediately saw a dear friend. She asked me how I was doing and I lost it. I really lost it. It was “ugly cry” right there in the church foyer. She kindly took me by the arm and led me upstairs to one of the pastor’s offices. I wept. I broke down and everything from the last several months fell out of me. She said something to me that morning that helped a lot. She said, “Sometimes we have to say the ugly thoughts that we don’t want to say and not hold them inside, because when we’re trying to be strong, and holding them inside, it’s causing us more harm than good. Once it’s out, it’s out. There’s no turning back and it usually feels better once it’s fallen off of your lips.” We sat there through the whole service talking. I was vomiting my feelings for most of it, but she sat there and listened and gently cleaned me up with words of encouragement and love. Then as I was walking back to the car, I ran into some friends who asked where my husband was and how Tullie was doing, and once they learned that we were taking turns at home, they took it upon themselves to watch our kids every week so that Mike and I could go to church together. I then went home and told Mike the “ugly things” that were in my heart and we had a great honest talk of what we had been feeling for months about our new little girl. I will forever be grateful to those friends. They helped us through a really tough time for us.
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