CDH International’s featured patient of the week is CDH adult survivor, Jessica Tillia. Jessica’s mom Sharon, had this to share about her daughter’s inspirational journey with CDH:
“This journey started on a Friday when I was fixing my daughter’s hair for school and went blind for about 45 minutes. At this time, I was in my 8th month of pregnancy with Jess. My vision rippled back so I got dressed and went on to work. I had an OB appointment on Monday and needless to say my doctor was not pleased I did not call them on Friday. After tests, they found a blood clot in my occipital lobe of my brain. I already had gone through 2 amnios because they said I was a high-risk pregnancy at age 35. Friday of the same week, I was in the hospital to be induced. Pitocin was started and I was informed to let the doctor know when I was feeling contractions because I would need an epidural since this was my 4th child. I was not thrilled about that as my labors and deliveries in the past were easy, but they did not want me pushing in any way for the fear of dislodging the clot. Around 3:00pm, the doctor came in to check on me and told the nurses to get me to the delivery room. Again, no pushing so a vacuum-assisted delivery was performed yielding this beautiful baby girl at 4:49pm weighing in at 6 lbs. 1 oz and 19 inches long.
Jess was immediately taken to the nursery where she was in an isolette. She appeared to have some breathing difficulty so oxygen was pumped into the isolette. A wonderful nursery nurse noticed she was having unilateral chest movement and insisted on an x-ray. The x-ray revealed her intestines were in her left chest and heart pushed to the right, which were causing the breathing issues. By 10:00pm, she was in the bird (helicopter) on her way to the Children’s Hospital of Pittsburgh where she underwent surgery to put everything back in its place, and to close the hole in her diaphragm. Many babies never made it that far because at that time these congenital anomalies were not visible on an ultrasound and you did not know they were there until after birth.
I was up all night waiting for the phone call telling me that the surgery was done. When it was finally done, they told me she was in the NICU doing fine. They said as soon as they put everything back where it belonged, the left lung was still pink and blew up like a balloon and was functioning well. Gases were being done frequently, she was on oxygen, tube feedings, intubated, chest tube, IV, belly cut wide open, and cut down the wrist. They told me she would probably be in the hospital for 4-6 weeks. She maintained her oxygen sats and I was calling many times to inquire. My husband and my mother went to visit as I had to remain in the hospital for further testing to see exactly where my clot was. On Sunday, I called and they told me she was trying to extubate herself so they figured they would give it a try and she did fine with just the oxygen! They started her on minimal oral feedings and which she wanted more.
I could not leave the hospital until further testing and an evaluation was done to come up with a treatment plan for myself. I left the hospital on Monday on meds to dissolve the clot and had a follow-up visit scheduled. I went to the Children’s Hospital on Tuesday. Jess was one big bandage. Oxygen sats were good, tolerating oral feedings and still in the isolette. I had wonderful friends at home that helped me with my other kids while I ran back and forth to Pittsburgh. She showed improvement every day and 2 weeks to the day she was born, she was discharged and at our local park watching her brothers play ball. Home breathing treatments, dressing changes, weekly trips to Pittsburgh, then the appointments were biweekly, monthly, every 6 months and then yearly until she was 8 years old. At 8 years old, she was given a clean bill of health although they told me she may not be able to do a lot of strenuous things without getting short winded. At that time, I was told 3 out of 5 babies die from this, 1 out of 5 require assisted breathing for the rest of their life, and 1 out of 5 have a chance at a normal life. Well, I was the lucky 1 out of 5. She played ball, was a cheerleader, and twirled baton. You name it, she did it.
The moral of all of my story is God blessed me with a little stroke to get my baby delivered a month early to survive. Another month in the womb, and her left lung would have probably been chopped liver and she would have never made it. My OB doctor, the nursery nurse, and her surgeon are my heroes along with everyone involved. And for the record, she set the time for fastest discharged and has not stopped almost 34 years later. As for me, other than a left peripheral vision loss, I am fine.
Jess will be 34 years old this year. She graduated from college with her Masters in Science in Clinical Dietetics and Nutrition. She practices as a Clinical Dietitian in a large acute care hospital and is a part-time instructor for the School of Nursing at the University of Pittsburgh. She still wears her battle scars with pride.”
If you are interested in sharing your child’s journey with CDH and becoming a featured patient of the week, please visit https://cdhi.org/feature-your-cdh-patient/.