When I first started this blog in May, 2009, I wanted it to be all about sharing information and assisting parents of Special Needs children with researching information and interventions. I did not plan to share my family’s pictures or names. But readers wanted a more personal touch. As a blogger and proud Mommy, I’m glad I agreed. I’ve had some requests to share more of Clara-Bear’s story. Since there would be no able2able without my Prettiest Pretty Princess, I think Preemie Week is a good time to start.




Clara-Bear’s Down Syndrome was diagnosed by amnio when I was 17-18 weeks pregnant. It was not an easy pregnancy – if I wasn’t working as a nurse in NICU, then I was on my back trying to stop the constant cramping. This made life kind of difficult since we had moved to Tennessee when I was 7 weeks pregnant to buy a business that needed much more attention than we realized. I was seeing a local OB/Gyn close to our home out in the country, but transferred to a Knoxville Perinatalogist after the diagnosis.

Clara-Bear was growing slowly so I was very closely monitored, usually every 2 weeks. Part of every visit was a warning about Clara-Bear’s high risk of fetal demise – just what every mom wants to hear. We were on our way to a visit during Baby-Bear’s 25th week and I remember telling DH that I was putting the smack down. No more talk about fetal demise unless it was about to happen. Fateful words!

(Papa Bear Holds his 18 Day Old Baby Bear for the First Time)

As soon as I saw her placental blood flow on the ultrasound I knew that something had changed. The tech’s reaction was a big clue as well. I took big breaths on the table, fighting tears as we waited for her to get the doctor. Like many babies with DS, Clara-Bear was having placental blood flow problems. We later learned that we were hearing the words fetal demise so often because over 50% of Down Syndrome pregnancies are lost in the second trimester.

The Perinatalogist was grim. We knew Baby-Bear was small, and there were some concerns about a possible blockage in her gut. He felt her prognosis was poor. We toyed with the thought of not delivering her if she could not make it to 28 weeks, when her chances of survival would be much higher. I was sent home for a weekend of bed rest. If you can call crying, praying, and trying not to wonder how small they made coffins “resting”.

(I'm a little princess, pretty in pink, I look cute when I cry, and my diapers never stink - 2 months old)

I burst into tears when I saw the placental blood flow at the follow-up ultrasound. Poor DH was freaking out – I couldn’t breathe enough to talk and tell him what I was seeing. Clara-Bear was now losing half of her blood flow to me. It was decision time – “let nature take its course” as the Perinatalogist was implying and return in two weeks to have the baby removed from my body, or to have an emergency c-section.

I had tried to contact some of my Neonatalogist friends back in Florida over the weekend and couldn’t reach any of them. I was still new at the NICU where I worked and had not become the Mommy Advocate I am today, so I was shy about calling any of those doctors. The Perinatalogist was not saying positive things about our baby’s chances of survival because of the DS, her size, and her gut. But I didn’t care. I couldn’t let my baby die based on vague numbers. I asked to be admitted and to speak to a Neo.

(A tape-free face after 2 1/2 months)

I asked the admitting nurse to turn the volume down of the fetal heart monitor. I had cried with joy when I heard Baby-Bear’s heartbeat at our first ultrasound and loved that part of our visits ever since. It made me feel connected to her. Now, I was afraid of hearing that precious sound stop and losing that connection forever. I kept telling DH, “If we don’t deliver her I’m not going home. I can’t walk around pretending everything’s normal and wondering if it’s happened yet.”

The first words from the Neonatalogist’s mouth were “why do you think your baby has less chances of survival because she has Down Syndrome?” He told us that micro-preemies with Down Syndrome were so rare that there were no statistics on survival, but all the neo’s felt that her chances of survival were the same as any 26 weeker. He even told us that the perception amongst the neo’s was that babies with DS were stronger than typical preemies. I signed the consent for a c-section on the spot. There were still some hopes of getting a little more time out of the pregnancy, but ½ hour after I signed the consent, Clara-Bear went into distress. I had never felt God’s timing more in my life than I did at that moment.

Clara Romana Midgett earned her first nickname, MiniMidg, on August 8th, 2005 when she was delivered at 26 weeks weighing 1 pound 8 ounces (707 grams), measuring a long, skinny 13 ¾ inches, and with rocking APGAR’s of 9 and 9. Her gut was fine and she had the typical preemie course – some feeding issues, an infection, blood transfusions, oxygen. She had a Ventral Septal Defect, but we were told that it was small and she would outgrow it. Overall, she was a tough mini-cookie.

(Last bottle in NICU, the next will be at home!)

She came home from NICU four days before her due date; with an apnea monitor, but on full bottle feeds and without oxygen. My constant prayer after her Down Syndrome diagnosis was that she be healthy. Unfortunately, the severity of her heart defect was misdiagnosed and she had severe reflux, so the next 8 months did not go smoothly for her. Click here to read about Clara-Bear's first year.

(Our little doll, finally home after 88 days)