Jada’s Very Own Children’s Hospital Miracle: Meet Tianna

Jessica Colarusso, Mother + Jada Blitz Employee

In July of 2010, my daughter, Tianna, was born – very prematurely. It was the most terrifying day of my life.
At birth, Tianna weighed 1.5 pounds and had something wrong with every organ. The medical staff at Children’s Hospital raced to save her life. The prognosis was very bleak, but I refused to give up or say goodbye to my baby girl.

Within the first week, Tianna was diagnosed with a PDA (hole in her heart), sepsis, and numerous other serious medical problems. This included a ventilator that would breathe for her during her first month of life. The medication they gave her to try to close the hole in her heart put her into kidney failure. They tried everything possible to help her. It was so overwhelming and emotional to see my teeny baby hooked up to so much medical equipment. She was very small and needed so much treatment, including a PIC line. At first they could not get one in, but she required one in order to survive, Tianna wasn’t stable enough to have the surgery to place one.
The medical staff at Children’s Hospital helped to comfort my family and I. They talked with us as much as we needed and they too were rooting for her to improve. The Neonatologist himself cheered when he found out the PIC line was finally successful.

Over the course of the next five months, I had two homes. My own which was an hour away and the NICU. It was so difficult for the entire family. My 6-year old son was very confused and scared, but the nurses made him feel welcome. They even played cards with him and took him to get popsicles. Specialists took the time to draw diagrams and explain medical terms. Every day I listened and asked questions during rounds and quickly became well versed in the medical issues Tianna was experiencing.

After six long weeks, I was finally able to hold my daughter! She was still extremely small and hooked up to a lot of equipment, but it was a moment I will never forget.

Weeks turned into months and it seemed that every time a specialist walked in, we would add another diagnosis to Tianna’s list. Around two months, genetic specialists discovered her chromosomal abnormality. They educated us and explained how Tianna has a deletion of a segment of her 9th chromosome and has a duplication from the segment below it. Come to find out that she is one of 3 in the world to have that exact abnormality!

This was difficult to hear as her mother, but what was even harder was when the neurologists discovered that she has periventricular cysts (“holes”) in her brain. The specialists consulted, but still could not give us a good prognosis of the future impacts.

We also learned that Tianna’s frequent bradycardic spells were due to aspiration and without a feeding tube, it would not be safe to take her home. At 5 months of age, Tianna had surgery to place her tube, a nissen (tighten the esophagus), and correct her hernia. The specialists worked closely together as she was still very fragile and on oxygen at that point.

The surgery was successful and in December of 2010, just days before Christmas, I was able to take my baby home. It was a mix of emotions, as we had become so close with the hospital staff, and they were my safety net, but it was my dream to finally have Tianna home.

Three months later we returned back to Childrens for tethered cord surgery and had to see several specialists a week for the first couple of years. Our visits have become less frequent, but Tianna still spends plenty of time at appointments and emergency department visits.

Tianna has been a fighter since her first day. She has made me a better person and has taught me about what is truly important in life. I will forever be grateful for my experiences and the connections we made at the hospital. We could not have gotten through the challenges life has brought us without the support of Children’s Hospital.