This is the abridged version of some of the major medical journey that Melissa has been through. We've really shortened and over simplified this to make it easier for people to read and grasp, as some of you already know from your own children.
| Within hours of birth Melissa was
transferred from our local hospital to The Floating Hospital (New England Medical Center)
in Boston. At the time CHARGE Syndrome was new, and not well known. It had only been named in 1979 with only 17 known cases. That was less than a year before Melissa was born. It was a while before she was diagnosed with CHARGE Syndrome.
Melissa had a mild stroke at birth, which caused paralysis on the left side of her body. She was later diagnosed with Bell's Palsy, and a heart condition called Tetralogy of Fallot, which is a combination of heart problems. She also had an under developed jaw (it was too small and caused trouble eating and breathing), ear abnormalities and a nasal bone deformity. The doctors initially hadn't expected her to live past a couple weeks. |
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In the first week they gave her a tracheostomy to help her breath
and intravenous feeding. She couldn't hold down food and was developing aspiration pneumonia due to a weak muscle entering the stomach. She had to sleep sitting up for several months. A g-tube was put in and a fundoplication was performed, which tightened the muscle in the stomach. She spent six months in the hospital. During that time she had a very difficult time gaining weight. Every ounce was a milestone. She was put on many formulas. We spent the next few years in and out of the hospital for months at a time. |
| With time the paralysis subsided leaving only facial paralysis. Physically she was already falling behind. She didn't sit up on her own until almost the age of two.At the age of 3 her Tracheostomy came out. We heard her cried for the first time. The G-tube tube also came out around this time. Her heart condition was deteriorating and the doctors needed to perform open-heart surgery but, they wanted these removed to reduce any other possible causes of infection. |  |
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Melissa was 4 years old now and had just
begun to walk. She had first open-heart surgery. The doctors repaired a hole in heart and
muscles around a heard valve. At the age of 5 Melissa had two ear re-constructive surgeries to correct the ear abnormalities. The doctor actually made an ear from her own skin tissue. At about 8 years of age she went through surgery to correct the nasal problem. The doctors went through the roof of her mouth to correct her problems breathing through her nose. |
| For the next
couple of years Melissa did well. We were still in and out of the hospital on a regular
basis. At age 12 her heart condition worsened. She would get very weak with little effort.
The first heart surgery had caused scarring of the heart muscle tissue around the heart
valve. The doctors performed a human valve transplant When Melissa was 16 she was finally healthy enough, long enough for our first family vacation. We took her to Disney in Florida. She spent most of the time there in a wheel chair because she tired easily. But, she had the time of her life. Now that she had grown more she had her third ear reconstruction. This was to correct any issues from the first reconstruction. The past three years have been relatively and happily quiet medically for Melissa.Knock on wood (knock - knock - knock). |
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