Our Letters of Hope

All my daughter Jenni has ever wanted to be is a mother. So she was devastated when she miscarried her first baby. Not long thereafter, though, she became pregnant again and we were all delighted. On February 2, 2005, she and Eric invited his parents and us out to dinner and the waiter brought out our drinks with “It’s a boy” swizzle sticks in them! Such joy that night! Such devastation the next day when an ultrasound showed that her son-to-be had one of the most devastating heart defects there is—hypoplastic left heart syndrome (HLHS). Twenty years ago this was a death sentence to every child born with it. Today there are three, not so terrific choices for the parents: abortion, compassionate care, or a series of delicate heart surgeries that are spread over a period of years. Jenni and Eric chose the third option after an attempt to correct it in utero failed.

Joshua (meaning: God is my salvation) decided he didn’t have enough problems, so he was born five weeks premature. Racing back from Pittsburgh where my husband Ken and I were for Memorial Day weekend, we arrived shortly after Joshua was born. There was a magazine ad not too long ago that read something like “What if the worst day of your life was your first?” Well, in Joshua’s situation that was truly the case. He nearly died three times that night. The third time the doctor came out of said he had only one more thing to try and if that didn’t work . . . we all filled in the blanks of his unspoken end of sentence. Praise God, it did work and Joshua lived.

Thus began his long, arduous journey with survival. He was hospitalized for the first 5-1/2 months of his life. He survived a catheterization that clearly the doctors did not expect him to survive. They came out of the cath lab giddy with relief. He has had a brain bleed, and he also went into cardiac arrest and had to have chest compressions. Fortunately, it happened as the doctors making rounds were standing over his bed! He was intubated for 81 days and finally had a tracheotomy that left him with a trach for nearly three years. Thank God, now there is only a scar. He has had numerous surgeries—the first two heart surgeries (the Norwood, a hybrid surgery that is not usually done, and the Hemi-Fontan). He has also had surgery for strabismus (eye problem), to place a G-tube because feeding was a real problem, diaphragm placation to enable him to breathe better, tonsillectomy and adenoidectomy. In addition, he is plagued with lung issues resulting in pneumonia and, they believe now, asthma. He has not yet had his third heart surgery, which is currently scheduled for this August.

Somehow through all of this Joshua has managed to become an absolutely adorable four-year old who talks “a blue streak” despite a paralyzed vocal chord and, although he has low muscle tone (hypotonia), has met most of his developmental goals. He is a joy to all of us who know him.

As a grandparent, I have a different perspective on all of this. I have watched this little boy go through all of these obstacles like a trooper and still become an engaging and delightful child. But I have also watched my daughter and her husband go through some of the most hellish circumstances you could imagine. Believe me, it is horrible to watch a child you love so much go through so much. Jenni and Eric did what had to be done in every situation, no matter how difficult. The hospital personnel teasingly refer to Jenni as an “honorary nurse,” and it’s a title well deserved. I have also seen Jenni grow from a typical 20-something girl into a mature, loving, full-of-faith woman.

The saddest part though, is that so many families have had to go through all of this. Congenital Heart Defect research is badly undersupported despite its being the leading cause of infant death. This needs to change. Tell our stories. Help get legislation passed. Contribute to hospitals and organizations that are doing research in this area. Don’t make more children experience what these have been through. Don’t make more families bury their infants or toddlers who didn’t make it.

Sincerely,

Joshua’s Grandma
(and Grandpa)