Hagood, Shana Kay

[left:43af8043bf]http://www.cherubs-cdh.org/Album/new/hagood-shana2.jpg[/left:43af8043bf]My daughter’s name is Shana Hagood. She was born with a congenital diaphragmatic hernia on June 20th, 1983. We had no idea she even had a hernia until October of the same year. We were in California visiting my mother-in-law when Shana became very ill on a Saturday, mid-October. She had symptoms of vomiting bile and being very listless. We called the doctor and were told to keep an eye on her-- it was possibly the flu. About two hours later, her lips were becoming discolored, and we knew it was time to take her to the hospital. They ended up transporting her to a children’s hospital. After four days of going from the diagnosis pneumonia, then cancer, even diaphragmatic hernia (this was the first diagnosis but we were never informed of that because it was never agreed upon by the residents), they finally decided to do exploratory surgery. They found a very small hernia, the size of the eraser end of a pencil. Her small bowel had become lodged in the hernia and had no circulation during the past four days. The majority of her small bowel had died, but they left 30 centimeters to see if they could save as much as possible. After two more surgeries, she ended up with ten centimeters. This was a blessing for us, because we had been told she would need at least 10 centimeters to even be able to survive, and if she did not, we needed to make a decision on whether to prolong her life.

Shana now was an infant with what they called extreme short bowel syndrome. She was in the hospital for three months straight, during which time she had two bowel obstructions from scar tissue (two more surgeries), a fistula and a fever off and on. The longest I was able to take her home was for about ten hours on Christmas Day. Shana continued to have problems with getting the flu and fevers for the next two years. Her first central line lasted for five years (infection free), which was probably too long; the surgeon said it was stuck, and he couldn’t get it out, so he cut the tip off and left it in there with a few extra stitches to keep it in place.

There have been so many trials, triumphs, tears, and yes, joy through the years, one would need to write a book. I have to tell you the funniest story was when we were at the grocery store, and Shana was in the child seat in the cart. I was lifting her out of the seat and happened to look down and saw this tube looking thing sticking out of one of the bars on the seat. I had to look real close (wondering what the heck it was) and realized that her gastrostomy tube had gotten wedged, and when I had lifted her, I had yanked it out. She hadn’t made a peep, and it turned out we never told the doctors for three days.

They were tube-feeding her progestimal, and she would wake up every morning and throw it up, and it was actually causing her to lose weight. Come to find out she was one of those few that have a reaction to that formula. We never did get another one. Shana has been through a broviac, hickman, two ports, a cathlink, and I don’t know if I remember all of them. She eats like a horse-- loves big juicy steaks (with lots of fat), potatoes, veggies, pastas, some fruit, potato chips, popcorn with lots of butter, and pretty much everything and anything. Her favorite two things are eggs and dill pickles. She does not care for sweets or peanut butter.

She is now a beautiful young lady of 19, is 5’ 7” tall and is definitely on the slim side. Everyone tells her she should be a model. She graduated from high school this year (she was held back in the 2nd grade) and is excited and nervous about going out on her own. She is currently TPN-free due to a line infection (recurring). She is having her line removed next week. We are praying for her independence from TPN, but time will tell. I guess she will need to take one day at a time; isn’t that all any of us can do? I remember when we started this journey, not knowing whether Shana would even survive, and now I look forward to watching her fulfill her dreams and hopes in life. When you go through such a trial in life, you want to just embrace each day. My advice – be your child’s best advocate at all times, be persistent, never be afraid to ask questions and make decisions on your own, and lastly, have a nurse for a good friend!


Written by Shana's mom, Vonda Hagood (Massachusetts)
2002