A Mothers Blog of her Child born with Ea-Tef – MCADD – CHD – Macrocephaly
Charlotte Engelson was born a surprise gender baby at 32 weeks gestation completely undiagnosed.
A Mothers Blog of her Child born with Ea-Tef – MCADD – CHD – Macrocephaly
Charlotte Engelson was born a surprise gender baby at 32 weeks gestation completely undiagnosed.
So we really got a surprise when she was transported to the children’s hospital 3 hours away and her NICU Dr. Called with the findings upon her arrival.
She had (EA-TEF) (MCADD) (CHD) (MACROCEPHALY) (EXTRA FOLDS OF SKIN ON HER NECK) and a bunch of other smaller things that were caused by the bigger findings.
We were very much in shock and had no idea what any of this meant for her quality of life. She had her EA-TEF repair at one day old. She had a blood transfusion at 1-month-old, cardiac surgery at 2 months to repair a coarctation in her aortic arch, and another blood transfusion during that surgery.
She had a cricoid split surgery at 3 months old to correct stenosis in her throat from being intubated and extubated so many times. (We almost lost her during that surgery) then at 4 months she had her NG feeding tube replaced with a G-tube and has Nissen done at the same time.
This is a surgery preventing her food from coming up into her esophagus. She is now 2yrs old and had countless hospital stays, tests run, dilations, and dr appts.
Her life isn’t always easy but she pulls through every time and we love to share her journey and spread awareness about her conditions.
