Emma
 |
Emma was born at 42 weeks weighing 9lb 8ozs. She has a cavernous hemangioma (a benign tumor involving the blood vessels) which appeared at six weeks. It grew rapidly, and Emma had her trach at 12 weeks.
That’s the short story, the longer version of those six weeks was us going back and forth to the doctors trying to convince them that there was something wrong. Being told by 3 different doctors that hemangiomas do no harm and it was just cosmetic, and that I was being overly concerned. When Emma developed a pronounced stridor, our doctor diagnosed a cold. By then we had done some research, and decided to take Emma to the hospital. She had the surgery the following week at Birmingham Children’s Hospital.
The hemangioma is between her shoulders, the size of half an orange, and the same on the left side of her face, dropping down lower than her chin, without a humid vent she blocks off the trach!. It is internal, distending the trachea, shadowing her lungs, and wrapped around her pulmonary artery.
Emma has no other problems. She is standing up now, and is learning a few signs. She isn't able to tolerate a speech valve, and chin dropping isn't an option!
The future for Emma is very bright, the hemangioma has stopped growing,
and
she has been weaned off the steroids which were controlling the growth.
The
hemangioma will regress naturally. The ENT team is looking at
decannulation
possibly when Emma is around 4 or 5 yrs old, but this isn't set in
stone.
