This is Harry's story. It is a long read however please take a moment to read about his journey.
Harrison was diagnosed with bilateral cleft lip and palate and Ventricular Septum Defect (VSD) during a four month ultrasound. It wasn’t until after he was born it was discovered he had additional anomalies. After six days in the Neonatal ICU, he left there with the diagnosis of:
Bilateral cleft lip and palate
Anopthalmia (absence) of the right eye
Iris coloboma and falciform fold in the left eye
Hydronephrosis (fluid in his left kidney)
Patent Foramen Ovale (PFO)
Neural Tube Defect (Encephalocele)
Harry has a total of 10 doctors, one pediatrician and 9 specialists, involved in his care. At 2.5 months of age, underwent part one of his bilateral cleft lip repair. He had a unique cleft where the doctor had to perform a lip adhesion prior to the actual lip repair. He was also born without a columella and is currently having molding and stint therapy to lengthen the skin so the cranio facial surgeon can create one. Because of the absence of his right eye, he will need to have a hydrogel ball implanted in the socket. This will help his skull develop and decrease the “sunk in” look of the right eye. It also stretches the eyelid so that eventually a prosthetic can be placed inside. These are time sensitive procedures and have the best end results when performed before six months of age. The cranio facial surgeon and the eye surgeon will be performing his next surgery at the same time to prevent him from having to go under anesthesia twice. He is scheduled for his second surgery on April 2.
The second surgery will comprise of:
Hydrogel ball implant for the right eye
Cleft lip repair
Cleft palate repair
He shouldn’t need any further lip or palate repairs however he will undergo many more procedures for the right eye. He is due to get another MRI at six months of age and if the encephalocele hasn’t closed then he will need to have surgery to repair that.
All of Harry’s medical care has been paid for by his parents through their private health insurance. Although he clearly has many medical issues, they have been denied assistance for medical care due to exceeding the income limit. His mother returned to work after four weeks to continue his coverage and although the premiums were high, there was no deductible and a low out of pocket maximum. The cost of the premium was worth it. At the end of January her company switched to a different carrier and they discovered many of Harry's specialists were not covered under her plan. His parents had to make the decision to switch him to the father’s plan because it was the better of the two albeit high copays, deductibles and out of pocket maximum.
Please help us reach our goal of 7000.00 to meet Harry's annual deductible and out of pocket maximum. Any contributions are appreciated. Thank you from the bottom of our hearts for taking the time to read his story. We just want to give this precious baby the medical care he needs and deserves.
- Francie Shuder
- Maria Stevens
- Bishoy Anastasi
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