Taylor’s Diagnosis Story Part One
March 6, 2013
Time of Birth: 5:51 PM
After giving birth to 8 children, I didn’t expect any surprises. I expected my 9th baby to be born on or past my due date, because of when I thought I had ovulated. So I was surprised when I felt the beginnings of labor in the morning of March 6th, 13 days before my due date.
Denial prevailed for most of that day, and then I was surprised again when my labor increased very quickly at about 4:45 PM. When he came out in one push only seconds after I had gotten into the birth pool, with no one present except my husband and 2 older daughters, I was surprised and could hardly believe that we had actually had an unassisted birth after contemplating and then discarding the idea earlier in the pregnancy.
I was surprised when Taylor was born; I took him in my hands and he hung over them, silent and floppy as a rag doll. We felt anxious for a few minutes as we leaned close and listened to see if he was breathing. His body quickly turned pink though, and when our midwife arrived and confidently ran her fingers up his spine, he cried a tiny little mew, reassuring us that he was okay.
As I held him close in the seconds after his birth, I was surprised when I saw how round his face was, and thought his eyes looked a little different. I also noticed his fingers seemed shorter than my other long-fingered babies had been. The words “Down syndrome” flashed at the edge of my mind, and I quickly pushed them away, not wanting to allow them in and cause it to be true.
When I got up for the first time, I beckoned my midwife close and whispered to her, “Is he okay?” She whispered back “Yes, he is perfect!” She added that she had not done the newborn exam yet, but didn’t see anything to be concerned about other than his being chilled from the pool water. I was relieved, but doubt still hovered underneath. “Is he developmentally okay?” Not wanting to say the words that I was thinking, not wanting anyone else (and especially my husband) to hear my fears. My midwife hugged me hard, bloody and naked on the toilet, and reassured me again. “Your baby is perfect.”
I went back to bed and snuggled up with Taylor, although I had to share him quite a bit in those first couple of hours with so many others anxious to see our new miracle. Each of his eight siblings got a chance to hold him, as well as three grandparents. I didn’t mind sharing, I was so thankful to have a new son! I tried nursing him, but he wasn’t very interested. I finally got him latched on to one side where he seemed very content, his skin against mine. A heating pad was placed over us, and his temperature was monitored every few minutes. The birth pool water had been too cool, and he had gotten colder than he should. Eventually his temperature stabilized, but we were instructed to check it frequently in the next few days to make sure.
After a time, our midwives came back upstairs and asked everyone to leave so that they could give us postpartum instructions. I remember thinking that it was strange for them to ask everyone to leave, but maybe I had just remembered wrong, maybe it had happened that way before.
I have grown to greatly love my midwife over the past 12 years since she was present for my first home birth. She has been there for each one since then, 7 times speaking her loving words into my heart just when I needed them most. I have always looked forward to hearing her soothing voice, encouraging me to gather my strength through the last and most intense contractions leading up to the birth of my baby. Taylor’s birth was different, and I was about to discover the special purpose God had in having her be my midwife for this particular baby.
Her first words to us after closing the door were “First of all, I want to tell you that your baby is perfect.” I released my breath when she said those words, not even realizing that I had held it. She continued, “Brenda, your mama’s instincts were right when you noticed that something was different about your baby.” And she then proceeded to tell us that she had noticed a few characteristics that led her to believe that our baby has Down syndrome. She quickly assured us that she had listened to his heart very carefully and heard nothing abnormal, and that all of his reflexes were present, although weaker than normal. She said “Brenda, you did nothing to cause this, I want you to know that.” Nelson asked about the signs, and she explained the low muscle tone which had caused his floppiness, Simian crease in his hands, and the almond shaped eyes. She encouraged us to love on him as we had all of our other babies, and spent some time answering our questions.
My mind was in a blur trying to process what we were hearing. On one hand, she had repeated several times that my baby was perfect. And then she had told me that he has Down syndrome! The two statements didn’t add up in my mind, and I wasn’t sure what I thought about them at first. I didn’t want to believe her, but in my heart of hearts, I knew she was right. I sat there in bed, hugging him close, looking into his round face and wondering who this baby was that I had just given birth to.
After the midwives left, we settled in to our quiet bedroom. This had always been my favorite part of a home birth, having the baby in my own bed only a few hours after giving birth, with the house asleep. But this time was different. My mind was racing. I wanted to know, but I didn’t want to know. We skirted the subject, both quietly processing what the day had brought forth. He took a shower, and I did a search: “down syndrome characteristics newborn”. I found two or three different sites and started reading. “Flat facial profile, upward slant to the eyes, head smaller than average, short fingers, hypotonia (weak muscle tone), poor reflexes, difficulty maintaining temperature”, and the list went on. Some of them were accurate, things I had noticed after only a few hours spent with my baby. Some of them were not. I closely examined his ears several times. Were they set lower than his eyes? I didn’t think so – maybe that meant he didn’t have Down syndrome after all! I pored over photos of other newborns with Down syndrome, and wasn’t sure what I was seeing.
Nelson went to the store for me at 1 AM to get some medicine for my after-birth pains. While he was gone, I kept reading, intent on finding answers. When he came back, I showed him the list of physical characteristics. Then I showed him an article titled “If You Have a Child With Down syndrome, You Will…” The first line of this article said “…you will cry, and you will wonder why you were chosen for this.” Nelson read the article, and the tears came. We sobbed in each other’s arms like babies, full of confusion and thoughts that we didn’t want to voice, that we were ashamed to even think.
You can read Taylor’s full birth story here.
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