om·pha·lo·cele noun \äm-ˈfal-ə-ˌsēl –  a rare birth defect that occurs in 1 in 4,000 —7,000 live births. It is a type of abdominal wall defect in which the bowel, liver and other abdominal organs protrude out of the abdomen and into the base of the umbilical cord. 

Until seven years ago, I never had heard the word, omphalocele.  It first entered my vocabulary when our newlywed son and daughter-in-law, Dan and Crystal, announced that they were expecting their first child.  At twenty weeks, they headed out for the traditional ultrasound study, eager to learn whether their baby would be a boy or a girl.  They learned much more than that on that day, and left without asking the gender of their baby.  Instead they learned that its organs were growing in a sac outside its body, and that further studies needed to be done.

Four weeks later, another ultrasound was done — this one by a specialist at a hospital sixty miles away.  They learned that they were having a daughter and that for her this omphalocele was one of a number of differences that make up a condition known as OEIS.  Their baby would face many challenges due to these birth defects, and her parents began a wild ride that now has become their “normal.”  Those of us who are mere mortals marvel all the time at the grace, the evenness, and the love with which these two young people have navigated the hospitals, the insurance, the medical supply companies, and the misunderstanding of their daughter’s needs for nearly seven years.

But most of all, we marvel at the way that their daughter, the amazing Cheyenne, has grown into such a sweet, kind, loving, smart, well-adjusted, and happy child.

 

Omphalocele Awareness Day should serve to dispel some of the fear, the misconceptions, and the curiosity people have about these special children; but most of all, it should serve to remind them that these are children, not medical cases or anomalies or oddities.  Children – who laugh and cry, who play and pretend, who plan and dream, just like all children do.  And, like all children, they need friends who love and accept them — not in spite of what they are, but because of who they are.

The definition of omphalocele is quite clinical, very cut-and-dried; but omphalocele means so much more than those few words can express.

  • It means that instead of traveling five miles to the local hospital, Cheyenne would be delivered in Philadelphia and immediately taken to the NICU at Children’s Hospital.
  • It means that for the last weeks of her pregnancy, Crystal had to stay miles from home in a Ronald McDonald House so that premature labor would not create an emergency.
  • It means that the instant Cheyenne was born, she was whisked away inside a sterile plastic bag that kept germs at bay until surgery could be performed to protect her intestines.
  • It means that cuddling and cooing had to wait until the doctors worked their magic.
  • It means that her early days would be spent far from home in the Neo-natal Unit.
  • It means that when other children catch “the bug,” Cheyenne often ends up in the emergency room.
  • It means that more than a dozen surgeries have been required so far to ensure her health.
  • It means that her younger sister (and now her brother) has spent a whole lot of time in waiting rooms, doctor’s offices, and hospital rooms in order to be with their family.
  • It means that at age 6 1/2, Cheyenne has a better understanding of her life than most of the adults around her
  • And it means that Cheyenne has become a WARRIOR – An “O” Warrior.

Most of us think of a warrior as someone who wins a battle; but the true warrior is not defined by winning — she is defined by persevering, by fighting the uphill battle, and by never giving up.  Battling becomes a way of life, not a sometimes event; and the warrior does not let the battle become all that there is in her life.

Being a warrior means dealing with the battle and then going to the playground or playing dress-up or singing in the choir, or rollerblading.  It means taking care of herself every day so that she is ready for the battle and ready for the normal fun that is the life she dreams of living.

As the grandmother of a warrior, I can tell you this:  There is not a member of our family who has not been infected with the warrior gene that Cheyenne has brought our way.  There is not one of us who has not been changed by loving this incredible, funny, sweet, happy, and amazing little girl.  She is the ultimate “O” Warrior, but we all have become warriors as we have learned from Cheyenne.  She has taught us, with her very normal exterior, never to forget that each person we meet might be facing a struggle that does not show on the surface of their life.  She reminds us daily to be kind and compassionate; because truly, a warrior does not show on the surface the battle she fights, and we may not always realize that we are in the company of warriors.