Babby Connie

Diagnosis: Trisomy 21

By Connie's Mom

My husband and I had just married Vegas Style back in June. We had been together since 1999 (at least as far as I can recall) and had a beautiful daughter in 2002. I had her on his birthday. Things had happened so fast that our relationship crumbled and we split by 2006. These past few years we had started dating again reigniting a love that had never died, but had been painful. We decided we wanted to be together no matter the obstacles and married June 2010. This was our new beginning.

By October we were already experiencing some of that familiar frustration and having some issues. I was so upset I took a pregnancy test to confirm I was not pregnant. Of course, I was. Unable to see past our issues at the time to actually appreciate that result, I was just not happy about my situation. I already thought it was over again. We sought counseling. I had a couple of epiphanies and started to be happy once again. I had to be as healthy as I could be for this new life inside of me.

I was nervous my entire first trimester. I was bleeding daily, seemingly the whole time. Once I had filled a whole pad with bright red blood, I had freaked out. I begged my baby to stick with me and apologized to it for anything horrible I might have thought or said in the beginning. When the bleeding subsided and then stopped, I then started to feel relieved and super healthy and great. I put the bygones to the side and decided I was happy and that I loved my husband. We were happy again.

Because I never turn anything down that’s offered to me, I took the blood test. I just wanted to rule out any birth defects and never actually thought my test would come back positive for anything. When I got the call from the nurse she said the results were negative for Down Syndrome, I gave a sigh of relief. The very next day, my doctor called me. Suddenly, he told me that after reviewing my quad test at least a few times, I was indeed positive for Down Syndrome. I was angry that they changed the results on me. He kept saying it was probably a false positive, misleading my thinking. This was at the end of January 2011. I was 17 or 18wks.

I should have suspected something when the doctor kept putting off my ultrasounds. I had made an appointment and he had me cancel it because it was too early. I rescheduled it for later then he made me cancel that appointment so that I could have a Level 2 done. He said that this was better as the doctor would see the baby’s organs better. All I was thinking was, “Cool, he wants me to have a better view of everything.”

The Level 2 was scheduled for the end of February. The blood test was in the back of my mind for about a month now. I had bothered me. As we sat there marveling at seeing our baby on the screen and how active “She” was, the tech was taking multiple shots of everything, specifically the heart, stomach and kidneys. Once the doctor came in and I heard them talking, I knew in my heart already that the child had Down Syndrome. I knew too much medical terminology to be in denial. I started weeping quietly in fear.

I already loved her so much at 21weeks. I was angry when the tech commented on our baby’s nose. They left us alone for a minute as they were probably deliberating our results from the Level 2 ultrasound. My husband still thinking this was a fluke seemed okay. Inside I was freaking out. The doctor came back and told us because my blood test results were so high (1/45) and the baby’s marker was an echogenic stomach, I should take the amniocentesis test. Initially I was against this procedure, but I just had to know. I came this far and had worried far too much and I just needed to know. I allowed the doctor to do the procedure. It wasn’t as bad as I thought it would be.

The very next day, I got the call with the FISH results from my OB doctor. He said the test was indicative of Down Syndrome. I was already drained and defeated. I sighed and then called my husband and told him over the phone. In my mind, we were going to keep her. I loved her too much. That weekend I still went to Baby’s R’ Us and made a payment on items I had put on layaway. Because I had previously been afraid of miscarriage, I had been careful in bringing things home and still had some foresight to think that at least with layaway, I wasn’t bringing things home yet. I measured my 8yr olds room and made plans for placing a crib and a dresser for our daughter who was on the way.

Prior to our appointment with the Geneticist, my husband had done a lot of research. He was trying to tell me of all the complications that came with Down’s Kids and I just wasn’t trying to hear it. I was angry with him. I was mostly just on message boards communicating with mothers or mothers to be of babies with Down’s. They mostly only mentioned positive things.

Five days after our FISH results, we were sitting with the Geneticist. He was generally informing us with facts and statistics mostly based on averages. What impacted me the most was when he said that on average, most children with Down Syndrome stay with the mind of a 6 year old. My baby’s life and our family’s flashed before my mind. We would have to care for this human for the rest of our lives. Our beloved baby may never advance to the point of independence. We would worry about her for the rest of our lives. We had no way of knowing the severity of her health complications. We’d have to wait and see.

My husband wept as he realized out loud he’d never be able to hand her a set of car keys and tell her to have a good time. We may never be able to hand her $5 and expect her to get us milk and change. She’d be forced to see so many sub-specialists of doctors and be limited to state programs for a limited time. We’d might even die before she did and be forced to leave her in an institution. We couldn’t possibly count on others in our family to handle such a responsibility. I would want to quit my job. That’s not an option because we rely on my insurance. My mother has her own health issues. How could she possibly care for my baby’s and hers?

I have two cousins with severely retarded children. I’ve seen their pain and heartache and resentment. One cousin has already admitted to gladly giving up her daughter to the state when she turns 18. Not because she doesn’t love her, but because her life has been turned inside and out with her. My other cousin does a great job, but I’ve seen her break down. I realize now that I tried to comfort her in vain as I couldn’t have ever related to what she was really saying. She’d be changing pads for her daughter for the remainder of her daughters life.

I cried and told the Geneticist that I felt so cornered. Suddenly, pregnancy interruption sounded better than this life I just pictured for my baby and our family. We only wanted the best for our children. And doing our best, would just never be enough. Our best wouldn’t have given our baby the life we wanted her to have. It was a bad ending no matter what for us. I was 22.5 weeks. I went from determined to defeated. Our Geneticist was fantastic. He gave us the facts we needed to make our decision and the resources for our pain.

These past few days I went through the ordeal of a D&E. It was my only option through my HMO. I had wished I had the option to give birth and hold my baby and have all those keepsakes and ashes. All I have is a box full of ultrasound pictures and a bonnet my mother-in-law gave to us on behalf of an unknown aunt.

I have yet to write Connie a letter of apology. I was going to name her after my mother whose name is Consuelo (meaning comfort). This was the worst decision of my life that my husband and I have ever been confronted with. It has brought is closer together. We know our decision was out of love for our baby girl. I miss her so much. My belly aches for her kicks right now. I know she’s in a better place. Nothing seemed better than Heaven for her. Especially when this life on Earth can seem much like Hell at times.


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