age, I knew I wanted to have several children and so we stopped birth control and figured it would take 6 months to a year to get pregnant.
The first round of tests yielded a positive finding for me as a cystic fibrosis carrier. It rattled me and shocked my whole family. We never knew that any of us were carriers. Thankfully my ex was negative and so CF was ruled out as a possibility for our baby since both parents have to be carriers in order to have a chance of the baby having CF. But the incident rattled me.
My ex and I were divided over genetics testing. I wanted it, He wasn’t sure about it. We inquired about our options and settled on the nuchal fold test as a first step. Results came back that showed virtually no chance of Downs Syndrome or a
trisomy. The doctor raved about the test and said we should not worry and just move ahead with the pregnancy. No family histories to worry about and we were on our way.
As the pregnancy progressed, the baby wasn’t very big. My mother worried aloud wondering if there were major growth problems. It irritated me at the time. Why worry? The baby was probably small. My ex and I were both little, after all. At
the 20 week sonogram, we were told the baby I was carrying was a girl. My ex was certain it would be a boy. His family rarely had girls. I was certain it would be a girl. I was elated. My ex was in shock. We were both happy. We told our
families and everyone to think pink. My mom said, “Congratulations! You will have such fun for 12 years!” (I was a horrid teen, full of attitude and unkind words which I deeply regret).
My ex examined the ultrasound pic and said, “I think there is something wrong with her mouth. Maybe a cleft lip.” I didn’t see it and the docs said no. We forged ahead.
At 31 weeks we were told the growth was extremely behind, my blood pressure was high, the umbilical cord had three vessels and Doppler flow to the cord was irregular. We were rushed to the hospital and warned that a preemie was on the
way. She didn’t arrive that day but testing commenced. What, if anything, was wrong with me? What might be wrong with the baby? Tests yielded no results. One doctor said, “She may just be small and otherwise healthy or she may have major
problems. We won’t know until she arrives.” They gave me a steroid shot to mature the bay’s lungs and sent me home on modified bed rest with strict orders not to work and to eat a lot more. I tried to focus on positive things and I
truly believed that the baby would be ok.
Welcome to Wonderland where you don’t get to plan your life anymore. The truth is we were never in control of anything, we just thought we were. That’s a hard truth for anyone to learn. The question mark hung in the air for 6 weeks. My ex, my
mom and I checked into the hospital to have the baby by C-section two weeks early.
She was born at 5:40 pm on Friday, March 3rd. In rapid fire fashion and devoid of emotion, the neonatologist announced:
She has a three vessel cord wrapped around her neck several times.
She is much smaller than expected, only 4 pounds and six ounces.
She has a cleft palate.
She has ten fingers and 12 toes.
She has an ASD and a PDA.
She has a shrill cat-like cry.
She has a simian crease.
She needs to go to the NICU for testing. Looks like a genetic disorder.
And down the rabbit hole we fell. Hard. Fast. No soft landing.
Then they handed me our baby. I looked at her and thought – she looks so pretty, so much hair, so tiny. But I also felt extreme heartache. The kind of heartache you feel when you think you may not live through it. The kind that pierces your
heart and breaks it like glass into a thousand tiny pieces. I started to feel faint. I asked my ex to hold her. He did. Then they took her away and I didn’t see her again until the next day. They wouldn’t let me go to the nursery until the epidural wore off.
My ex could go see her and hold her. He came back and told me how beautiful she was. My OB came and assured us that she was doing fine but they were running tests to get the full picture. The nurses were quiet. No one came to talk to me
about breastfeeding or pumping. My mom was worried sick and in full-on Supermom mode. Friends embraced us carefully and lovingly for what would become a lifetime of hand holding.
I felt utterly devastated, scared to death and lost. Hopelessly lost. Here I was a newlywed with a sick baby and no one could tell me if she would be ok. My dream of motherhood, the only thing I ever really wanted, was NOT supposed to play out
this way. This was not the way it was supposed to be! I wished and prayed and hoped for a miracle. On the next day I held her and it felt wonderful. She was cuddly and beautiful. She had the cutest little nose, the sweetest little cry.
We were hopelessly in love with our sweet child.
Tests later revealed she had 1q deletion syndrome which meant that she was medically complex and developmentally delayed. Some things could be fixed, others couldn’t. We were told she would likely never eat on her own, talk, walk, sit,
or stand, use her arms, know who we were, have any memories or any capacity to learn at all. We had no idea how long she would live. We would have to wait and see what she could do and how healthy she would be. Life as we knew it was gone. Life in Wonderland had begun.
I didn’t see it at the time but the miracle was Bella. She never should have been born. Most babies with her chromosomal disorder miscarry. She was a rare, fragile flower. Only 29 other people in the world at the time had been diagnosed
with the same abnormality. So there was no roadmap and few resources. We were sent home when she was 2 weeks old with a list of about 20 specialists and doctor appointments, a feeding tube and some resources for early intervention.
I guess every first-time parent goes home wondering if they can handle this parenthood thing. For us, that feeling was overwhelming as my ex, my mom and I dressed tiny Bella in the smallest preemie outfit we could find and buckled her
into her car seat to take her home.