A mother reflects on her baby’s amazing year

Child faced many physical challenges.

By: Eileen Oldfield
   One year ago after her son, Jake, was born, Lynn Whitenight spent most of her days pacing the halls at St. Peter’s University Hospital.
   She’d wake up around 5 a.m., stay at the hospital until 11 or 11:30 p.m., come home, sleep, and do it all over again.
   Shortly after birth, doctors diagnosed Jake with three holes in his heart; a polycystic kidney; an enlarged kidney; an iris coloboma, or a keyhole-shaped iris; hearing loss from microtia bilateral atresia, a bony plate where an ear canal should be; one missing outer ear, and one malformed outer ear; and trigonocephaly, a skull deformity.
   "When he was born at the hospital, they said that this is what he is," said Ms. Whitenight. "They made us feel pretty bleak."
   While the Whitenights weren’t counting on miracles, they’ve come close to getting one. The holes in Jake’s heart spontaneously closed; the cysts in his kidney disappeared. His enlarged kidney, which had a chance of siphoning urine from his bladder to his kidneys, works normally, and surgery isn’t necessary for his trigonocephaly. Doctors fitted him with a hearing aid in December 2006 and according to Ms. Whitenight, he’s had no problems from the hearing loss.
   "We’re really not questioning much," said Ms. Whitenight. "We’re not saying it’s a miracle, but we’re grateful."
   The Whitenights haven’t been alone in the last year — several community organizations, including the Manville Youth Athletic League, The Ladies Aid of the Manville Reformed Church, and The Somerset MOMS club, held fundraisers for the surgery, and offered the family support.
   "Everybody in this community has supported us unconditionally," said Ms. Whitenight. "It’s just impossible to reach every single person who helped."
   Jake still needs surgery to correct the microtia; the family has two surgery options to fix the disorder.
   The first option, a rib graft, involves sculpting an ear from Jake’s rib cage cartilage, and drilling a hole through the bony plate to form an ear canal. Because the rib cartilage is not developed enough now, the surgery cannot be performed until Jake is 5 or 6.
   The second surgery option would involve sculpting an ear from Medpor polyethylene, a material used in cosmetic surgery. Medpor surgery can be done earlier, and takes less time to complete than a rib graft. Specialists must perform either surgery; the surgeries are not covered by insurance.
   "We are really leaning toward the rib graft, but he is only 1 year old," said Ms. Whitenight. "Not a day goes by that we don’t do research."
   Despite the struggles with the insurance company, and halted renovations to their South 21st Street house, the Whitenights’ outlook isn’t as bleak as it was a year ago.
   "Over the past year, I’ve come to realize if he wasn’t meant to be the way he is, he wouldn’t be here," said Ms. Whitenight. "We realized the best thing that happened was the missing ear. If we didn’t have it, we wouldn’t have known about the hearing loss until he was 2 years old."