Saturday, April 11, 2015

April 11 - Dear Nicholas Sparks (Guest Blogger Denis and Beth Metty)

Dear Mr. Sparks,

In July of 1996 my wife, carrying our first child at 16 weeks gestation, and I, found out from a routine ultrasound that my daughter had a life-threatening defect. The doctors called this defect a "congenital diaphragmatic hernia". This defect is caused when the diaphragm fails to form partially or fully in the developing fetus. As a result, the hole that is left where the diaphragm should have been, allows the lower organs (stomach, intestines) to float into the lung cavity preventing the lungs from growing while the fetus is in the womb. The fetus does not use its lungs in the womb, so this is not the problem. The problem lies when the baby is born around their due date, and eventually dies within a few hours because the lungs are not developed enough to handle the oxygen/carbon dioxide exchange the body so desperately needs to survive. Attempts can be made after the baby is born to save its life. Surgery can be performed to remove the lower organs to their respective places in the body. Medical machinery then hooked up to the baby buys time for the lungs to develop over the next few weeks. Six out of ten babies will still die as a result of the hernia. This defect will affect 1 in 8000 babies (June or July 96' issue Readers Digest). Our case was more severe in the fact that Abigail had a left-sided diaphragmatic hernia. The liver, stomach, and intestines had floated up into the lung cavity pushing the heart to the right side of the body. This was not only a problem because of the lack of lung growth, but her umbilical vein, which is attached to the liver, was skewered throughout her body, making it difficult for her to get nutrients to all of her developing life systems. The doctors informed us that Abigail's prognosis was grim, and that her only real chance for survival was to have "Fetal Surgery" performed. The doctors and medical staff had told us at the time that even with the surgery, only two of the babies out of the 12 that had the procedure done had survived. Having tried to conceive a child for the past two-and-a-half years, and then getting pregnant with Abigail, we felt that it was our only option. The only two places currently doing this type of surgery are in San Francisco, California, and the Children's Hospital of Philadelphia in Philadelphia, Pennsylvania. We then flew from our home in Michigan to Philadelphia where for the next four months we were in and out of the hospital while staying at the Ronald McDonald House of Philadelphia. This "Fetal Surgery" procedure involved preparing my wife for surgery (running tests, MRI's to verify the defect, etc... performing the actual surgery at 29 weeks gestation, which entailed cutting my wife's uterus open, exposing Abigail, and then performing the surgery that may or may not have helped to save her life. My wife was then sewed up and the watch would be on for when Abigail would be born. Because of the delicateness of the surgery, my wife was unable to eat anything for four days for fear that it would bring on labor. Once that fear was gone, we were sent to the Ronald McDonald House where for the next eight weeks my wife would be on bed rest with the exception of weekly hospital visits, and visits by the nurse on a weekly basis. Abigail would be the first congenital diaphragmatic hernia survivor after having gone through fetal surgery at the Children's Hospital of Philadelphia. There are many more details throughout the process after Abigail was born that I have left out, but enough has been given to give you an idea of the situation. While in Philadelphia, my wife and I helped create a "Fetal Surgery" Video for the Children's Hospital of Philadelphia. This video is used to educate potential patients about fetal surgery and all of the defects that can possibly be helped, including congenital diaphragmatic hernia.

Written by Abigail’s parents, Denis and Beth Metty (Michigan)

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