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TrachKid Profile

 
In February, at a routine appointment, the doctors saw a mass on the baby's neck.I was sent to Women's Hospital in Greensboro for a 3D ultrasound which showed a tumor in the baby's neck that extended up behind her throat, nose, and eye.I then began seeing a team of specialists in Winston Salem. The tumor has been diagnosed as a teratoma, a benign tumor. The doctors initial prognosis was far from encouraging and they expected the tumor to multiply in size, affect the baby's thyroid, and possibly prohibit her swallowing and breathing. Since the tumor was found, I  had weekly ultrasounds in Winston Salem. The tumor has NOT grown as it was expected to, which is a miracle itself.
I had a scheduled c-section on Monday, June 23rd. Me and Madison were both completely sedated for the procedure. A team of 20 doctors were on hand to deal with any issues that could potentially arise. Madison underwent an exit procedure - the head is delivered first, the airway was secured and a breathing tube was put into place, and the rest of the baby was delivered. Thankfully the c-section and exit procedure were very successful and there were no complications.
On Wednesday, June 25th, Madison underwent an 11 hour surgery. A pediatric neurosurgeon first removed the portion of the teratoma located within the skull. There were no complications here. A piece of bone from the top of Madison's skull was removed and placed where part of tumor was at. The skull will fuse back together and this will be similar to a soft spot until then.

On August 15, 2008 the remainding portion of the tumor was removed. The surgary was a big success.

Madison has routine MRI's every 3 months. Madison is almost 1 year and still remains tumor free. The Doctor belives the tumor has become Mature and will not grow but will continue to do MRI's for the next year. After a year Madison should be able to have her trach removed.

Madison is such a beautiful baby inside and out. She is so strong. She is has been eating completly on her on since Dec with no NG or G tube. She has met all of her milestones and is actually ahead. We are so blessed to have such a wonderful, beautiful child.
Madisons tumor was such a rare type that we decided to join Trach kids to maybe find other kids with this condition also to talk to other parents with Trachs because that is also rare in the area where we live.

update: July 18th 2010

Madison has just celebrated her second birthday June 23rd, her ENT felt confortable enough now that her tumar will not return. On June 28th  scar tissue was removed then her trach was capped and a sleep study was done and she passed!!  The next morning June 29th at 12:30pm her trach was removed. How sweet is the sound of her voice and laughter we couldn't be more thankful to God for our precious baby girl!!

Update: October 16 2010

Madison is doing great with her trach gone. It is such a relief we were nervous about scar tissue returning. She is in the two year old class at pre-school and doing great making lots a friends. It is wonderful to return to a somewhat normal life again. Prayers go out to everyone on this site hopeing for nothing but wonderful things for all these kids are truly amazing.

• Gender: Female
• Demographic Region: North America
• Siblings: None
• Medical Conditions: Cervical Teratoma
• Ethnicity: white

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2 years 33 weeks

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United States

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North Carolina