Noelle was born in June of 2008 at 24 weeks gestation weighing 1lb 11oz. She had heart surgery to close a hole in her heart before she was 2lbs. Due to increased work of breathing, difficulty with her lungs and inability to wean from oxygen or eat easily without reflux...she had surgery for a Nissen/gtube when she was 6 months old. She struggled with Pulmonary Hypertension after that surgery and had some very rough days. Noelle finally came home from the NICU after 222 days. She spent a few weeks at home before going back in the hospital until right before her 1st birthday. We were finally able to get a support team together and send her home on high flow oxygen. She went in and out of the hospital pretty consistently for the first 2-3 years.
Her lungs have always been an issue and she's never been able to wean off the oxygen. Her main diagnosis is Bronchopulmonary Dysplasia, which is a form of Interstitial Lung Disease. Most kids grow out of this diagnosis by the time they are 2 years old. However, due to the advances in Neonatal care of micro preemies, more and more babies are being saved at earlier gestation and smaller weights...creating a more complex diagnosis for certain kids.
There may be other issues within her lungs, but the benefits of a lung biopsy have never outweighed the risks in order to figure it out.
Now, at 9 years old, Noelle is in the 4th grade. She's gone from attending school for a full day and being a cheerleader on oxygen...to home bound schooling, no extra activities and simply laying around the house when she can. She's exhausted and working too hard to breathe. Noelle was referred to Dr. Kurland at Children's Hospital of Pittsburgh several years ago due to her inability to wean from oxygen. At that time, he was hopeful that she wouldn't need a lung transplant and thought that if she did...it was way down the road. Unfortunately, that road became very short in the past year. Noelle should have her lung transplant evaluation at the beginning of December.
The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.