Neilah aka NeNe is a beautiful, happy 14-month-old little girl. She is the daughter of Breanna and Barry Nobles of Waukon, Iowa. NeNe has 3 brothers and 1 sister. NeNe was born 11/16/2020 with Complex Cyanotic Congenital Heart Disease and spent the first 45 days of her life at the University of Iowa Stead Family Children’s Hospital in Iowa City. At birth they found out she was born without a spleen which makes her more susceptible to infections. At 14 days old NeNe had her first open heart surgery. Her second was performed at 6 months old. NeNe did pretty well and had minimal complications with her first surgery. On 7/5/2021 following her second surgery NeNe was taken by ambulance and admitted back to Iowa City for difficulty breathing and diagnosed with a condition called Chylothorax which required chest tubes and a prolonged hospital stay of 11 days. On 7/21/2021 she was air lifted back to Iowa City for worsening shortness of breath. She was again diagnosed with Chylothorax, had to have another chest tube inserted and another prolonged hospital stay. Most recently on 1/24/2022 NeNe starting coughing up thick rubbery mucous plugs called bronchial casts. She was transferred by ambulance to Iowa City and admitted with a diagnosis called Plastic Bronchitis. The next day she had a procedure called a Bronchoscopy. During the procedure those casts they we’re trying to remove got lodged further into the lungs and her condition deteriorated for about 36 hours. She was on a ventilator initially but had to be taken off due to the casts becoming dislodged in the breathing tube cutting off air exchange. On February 3rd she was discharged home. On 2/7/2022 she was again transferred by ambulance to Iowa City for low oxygen saturations. During this stay it was determined that NeNe may need a specialized MRI and a procedure called Selective Lymphatic Duct Embolization. Iowa City is not able to perform this procedure so the medical staff at the University of Iowa Stead Family Children’s hospital have sent all her records to the Children’s Hospital of Pennsylvania (CHOP). Currently they are reviewing her case and will make a decision if she is a candidate for this procedure or not. If she is, her and her parents will have to fly to Pennsylvania. CHOP has a 100% success rate in all referrals sent from Iowa City for performing this procedure. This procedure could prevent NeNe from having further complications associated with Plastic Bronchitis. In addition to these current complications NeNe is in need of 2 more heart surgeries between now and age 3.
When NeNe was born Breanna and Barry had to drop down to one income so someone could stay home to care for her. They are currently raising a family of 6 on that one income. The ongoing hospitalizations have been very tough on them financially. They live 2.5 hours away from the Children’s hospital. Each trip requires gas, food they cannot cook, and Barry sometimes has to miss work.
Being in this situation changes the family dynamic. Their other children are often spending days with other family members missing mom, dad or both. Barry cannot be there for every hospitalization or the bills don’t get paid and there is no food on the table. Anyone that knows Breanna and Barry well know how generous, caring and loving they are. Especially when it comes to children. They have housed, cared for and financially supported other family member’s children when they we’re in need. They have been facing a tremendous amount of stress. We cannot take away all of their stress or change their family dynamic, but we can all pull together to help alleviate some of the financial stress off of them. No donation is too small, every little bit counts. Thank you again to all the wonderful pray warriors for praying for this beautiful little girl and her family. We are FOREVER GRATEFUL for all the love and support.
If it is decided NeNe has to have the procedure in Philadelphia, they will need plane tickets, food during their stay, and Barry will be off work unpaid while they are there. I believe we all have the power to make a huge difference for this family!!!