Featured patient of the week is CDH survivor, Bella Layne Burkett. Bella is currently in the NICU and her family had this to share recently on April 19th for CDH Awareness Day.
“Today is CDH AWARENESS DAY ❤️
Our Warrior Princess has fought hard and has overcome so much in her 110 days of life. She truly is a miracle. On this day, every year I would like to share Bella’s story. I know many have been following Bella’s Journey from the very beginning, and we cannot thank you all enough for all the love, prayers and support through all of this. By sharing Bella’s story again, and each year, we hope to raise awareness and show how amazing these kiddos are.
“Support the Fighters, Admire the Survivors, Honor the Taken”
Bella’s StoryBella Layne was born 12/31/19 at 39 weeks, weighing 8lbs. Bella was born with a Left Sided Congenital Diaphragmatic Hernia. Her intestines and stomach had entered her left lung and her heart was pushed into her right lung. She was placed on ECMO 2 days after birth and experienced many complications, severe pulmonary hypertension and pulmonary hypoplasia. Throughout her journey, Bella has also fought through sepsis, a pneumothorax with multiple chest tubes, a hemothorax, a pleural effusion, multiple instances of collapsed lungs, and cholelithiasis with a gallbladder tear that caused cholecystitis. We also recently found out she has a heart defect- a patent ductus arteriosus and an atrial septal defect. Bella’s repair surgery was on 1/29/20, where mesh was placed to repair the hole in her diaphragm. Her recovery has been a rollercoaster, but she is a little warrior and is fighting through it all.
At 110 days we are still in the NICU with hopes to be discharged soon. Before going home, Bella’s pulmonary hypertension and heart function need to be stable, she has a multitude of tests to complete (abdominal ultrasound, VCUG, Head MRI, Echo by cardiology, flow cytometry, room air and carseat challenge, and a stable BNP. Even though every CDH baby is different, they all go through so much. You can see with Bella’s journey just how much they can endure. She will go home on oxygen and a feeding tube, have multiple follow up appointments with many different specialists, see PT and OT, speech and the feeding clinic. She will continue to fight through it all. That’s what these kiddos do.
Look past all the medical complexities and you see a happy, smiley, social baby girl. She loves to visit with her friends, loves to play with her toys, loves snuggling, and gives the biggest smiles and giggles. We are beyond blessed with our happy little warrior princess. If I had any advice for soon to be or new CDH parents…. It would be that this journey really is a rollercoaster. You will have many ups and many downs. Do not give up hope. Our babies are strong. Our babies are fighters. And know, when you are standing there watching helplessly as your NICU team rushes to your baby’s side time and time again, you belong there too. You are an important piece of your baby’s care. Ask questions. Be involved. That is your baby. We had several instances where we almost lost Bella, where we cried with our care team because we didn’t know her outcome. That team is devoted to your baby, loves your baby and you are part of that team as well. If you want to be right there during emergencies, be there. If you better handle those situations from a distance, do that. Handle it the way that is best for you. But know that you are not an outsider looking in, you have an important role too.
Big hugs from the Burkett Family and we thank everyone for going through this with us. We are beyond grateful for all the support and prayers. We cannot say thank you enough to our NICU team and everyone at University of Iowa Stead Family Children’s Hospital for taking such amazing care of Bella and our family. We owe everything to the U of I team, Bella is here and thriving because of them. Happy CDH Awareness Day ❤️”
Bella just had a gastrostomy tube placed this past week and is making progress towards going HOME!