Yesterday, Asher had his half birthday. He is six months old. It was also exactly one year from when we found out we were having a son and that he had Down syndrome. We thought the news was devastating at the time, but have since realized it was life changing, but not devastating. To celebrate, I am posting an essay I wrote and submitted for publication in a book about how children with Down syndrome enrich parents' lives. Hoping it will be selected!
A Doctor’s Blessing
It’s hard being a doctor and a patient. It’s hard being a doctor and choosing a doctor---especially an obstetrician. You can go to one of your partners, but you have to be comfortable with everyone knowing your business. You can go to someone you do not know, but then you risk the unknown. And it seemed like in each of the large groups in town there was at least one doctor that I either knew too well and didn’t feel comfortable with them delivering my baby (but would recommend him or her to a friend) or had heard something about someone in the group that made me feel distrustful. The best case scenario is what I found when I was pregnant with my third child--your partner leaves your practice and starts her own practice. Not only did she leave, but two of my favorite nurses left and went with her, making it seem like family when I went to my appointments. She was more than my former partner, she was my friend. We had met each other in that miserable first year of medical school.
When it came time to offer me prenatal testing for chromosomal abnormalities, she said something like, “you do not want it do you?” Because she knew me and she knew it “wouldn’t change anything” as many of my similar minded friends say. But it would change something. It would allow me to be prepared. I am a planner, after all. Noninvasive prenatal testing was not available when I was pregnant with my two daughters. Not only did I want to know about the results of the test, but I wanted to know if I would be having a boy and therefore have to redecorate the nursery!
Then the wait. I was hoping the results of the test would come back the next week because I, the ultimate deal finder, had my eye on the cutest bedding set at a store that was going out of business the next Saturday. It would look so cute in a little boy’s room! The results took longer than I thought, however. She texted me 10 days after my blood draw and asked if I was working. That was a little odd. I was expecting her nurse to call and tell me everything was alright and to reveal the gender. So I texted back that I was indeed at work, but not busy and needed to know if I was having a boy or girl. No response. That was unusual, but I am sure she had just gotten busy. She was at work, after all. So I called her after I left and left a message telling her yes I had indeed left work, she could call me at any time. Then I received the phone call that would change everything.
Yes, indeed I was having my boy, and he had a 99% chance of having Down syndrome. She was prepared for the questions she probably knew I was going to ask. This test boasts a less than 0.01% false positive rate. She let me hand pick my perinatologist and got me an appointment for Monday. It was Thursday, the day after my husband’s birthday. She also told me that when the nurse showed her the result that morning, she cried, but she felt comforted imagining my husband, my two girls and me with our new little boy. She told me this was the hardest thing she had ever had to do during her medical career. She reminded me that of the three chromosomal abnormalities the test checked for, trisomy 21 was the one you wanted. It had the best outcome, the best long-term survival and less associated medical complications. Down syndrome is the most common chromosomal abnormality among live born infants occurring in 1 in 700 babies in the US. Ultimately, he has a common, well known, well studied syndrome that many doctors have expertise and he will be well taken care of.
All my life and the questions that I had as to why things were the way they were made sense in that instance. Why had I remained in my hometown instead of moving away like my sisters? I was the traveler, not them. I understood why I stayed at my current job giving me more flexibility with my schedule, when the organization basically split and the majority of my close colleagues left to work for another health center.
I spent the next few days mostly in tears, in prayer and with very little sleep. I was mostly mourning the loss of the son I had imagined. I was fearful of the unknown. What life would be like? This wasn’t supposed to be happening to me. I am a doctor. I am supposed to be the one delivering bad news, not receiving it. I reached out to the Down Syndrome Association in my area and was put on the phone with the executive director who had an adult daughter with Down syndrome. She was very reassuring and kind. I also spoke to a friend from high school, who I hadn’t spoken to since graduation, about her toddler with Down syndrome. She made me realize my life was not over, it was just beginning---that I should not underestimate my son, that he would enrich my life. And she was correct.
The weekend dragged on. I went to the perinatologist preparing myself to hear bad news. I had decided against invasive testing and did not really want to hear about it or about termination. I knew it was his job to inform me about these, so I went in saying that I did not want invasive testing and that I was moving forward with the pregnancy. He was very kind, I knew him, and he treated my husband and me as friends. I could tell he was worried. I wanted answers and he was very cautious.
Prepare, I did. I scoured the internet, read 6 or 7 books, some medical some not. The pregnancy was a roller coaster. Once I got over the initial shock, I for the most part was doing okay, but then I would not be. Every time I went in for a high risk appointment, I had come up with a new medical problem that I was sure he had, and was relieved to find out he did not have it. My faith was really what sustained me.
Initially, we told our immediate family and a handful of close friends. Within a couple of days, we wrote a letter we sent to other family members and friends. We eventually shared the letter in a blog and shared the link on Facebook. I wanted everyone to know, so there wouldn’t be questions when people met him after he was born. It still was an awkward subject. I would run into someone I knew, nothing would be said about it, and I wasn’t sure if he or she had seen my post or not. Most of the time, they had, they just didn’t know what to say. My 90 year old grandma was the first person I told who did not react like it was bad news and did not say she was sorry. She assured me that he would be a blessing.
I knew I had finally come full circle when at the end of my pregnancy I was awake one night worrying about the fact that I did not yet have a wreath for his hospital door. I had finally gotten to the point of almost enjoying my pregnancy and worrying about typical pregnancy things.
The last few weeks of my pregnancy, I saw my doctor twice a week for testing. One Tuesday, I went in to my appointment. I had the rest of the afternoon free because my girls were in preschool that day because I had taken off work to go to the appointment. I was planning on getting a manicure and pedicure after I left the appointment. I never made it to the nail salon. The baby decided to not cooperate with the testing and I was sent in for induction. The nurses asked if I had a birth plan. I did, I just wanted to hold my son. I was afraid he would be whisked off to the NICU and that I would not be allowed to hold him. The next day, exactly 6 months after hearing his diagnosis, I was holding my son. The birth was joyful. I had done all the grieving and was prepared as much as I possibly could be, so that all that was left was joy and happiness to finally meet him. He did remarkably well. He has only a few minor medical problems.