Grandparenting a Child with Esophageal Atresia

As the grandmother of a child with esophageal atresia, I have learned a lot about life in general and what is important and what isn't.

When my own two children were born, there was no real appreciation of the fact that they were "normal." Even though I entertained thoughts of possible birth defects or of something going wrong, I didn't really believe there would be.

Because so much more is known now about the effects of smoking, drinking, and even over-the-counter medications, my daughter was extremely diligent and careful about what she took into her body.  It seemed so unfair that this should happen to her.  I watched her suffer through a horrible pregnancy and financial ruin; she was the owner of a business which needed all her effort and attention to survive.

When a sonogram showed a probably defect during the 5^th month of pregnancy, we didn't know whether to continue to be excited over the approaching birth of our first grandchild.  I had a constant feeling of impending doom.  We were told that the suspected defect was fixable, which was a comfort.  But there was a lot of fear involved.  To me, the term "birth defect" conjured up a mental image of a baby with one eye right in the middle of its forehead.  When our granddaughter was born, however, we were pleasantly surprised—she was beautiful—and so tiny, only a little over five pounds.

At the Neonatal Intensive Care Unit of the local hospital, the needs of the grandparents were not even considered.  My husband and I were allowed one by-appointment-only visit of 10 minutes per week, which, because we had to be accompanied by one of the parents, had to be split between us.

When I expressed concern that the baby was not being picked up by some of the nurses for feeding (a syringe was attached to her G-tube and suspended above her), the medical director of the NICU informed me that, "no child ever died from not being held." I still get upset when these unpleasant memories come to mind.

After four weeks the baby was transferred to a Children's hospital, which allowed unlimited visitation.  At last I could sit and hold her!  What a joy this was for me!  The hospital was close to my husband's company, and he would go to the hospital during his breaks and lunch hours just to stand by the crib and look at her.

When she was finally discharged home at age 2 months, we were delighted to have our daughter and son-in-law living with us so we could be with our grandchild every day and assist in her care.  Everyone helped and hovered over her.  There were times when I would think of things I could be getting done if I were not holding the baby, and I simply reminded myself, "there's nothing more important than holding this child."

She was a happy baby and not at all demanding.  The tube feedings weren't all that bad.  It was the esophagostomy (an opening in the neck where the esophagus is sewn to the skin to empty saliva and other swallowed foods) that was the worst part.  We used terrycloth bibs lined with absorbent padding to catch the draining saliva.  These needed to be changed 12-15 times a day, along with her shirt, which was also wet.  Needless to say, we were always doing laundry.  This continued until she had a colon interposition when she was 2 ½.

We are all still living together, and our granddaughter now has a 2-year old brother to keep her company.  We have a lot less money these days—and a lot less freedom!  We used to go out as a foursome, having a lot of fun and enjoying each other's company.  But, would we change anything?  Absolutely not!  Having these children here with us is the best part of our lives.

— Name withheld