Later that day I ran up to the hospital to see the babies and meet the parents. As I was assessing each infant, I was thinking what I would say to each family. Every situation is different but at that moment, dealing with any birth defect can be very overwhelming. The first baby was a cute little girl named Maddison, who had a bilateral (both sides) cleft lip and palate. The abundance of tissue in her chubby little face would be helpful for a good repair. The next baby was a precious little boy called Ray-Ray who had a rather difficult delivery resulting in his respirations and heart rate being on the high side. When this happens the doctors usually order blood tests and x-rays. At that time there was no definite diagnosis. Ray-Ray’s cleft lip and palate were also bilateral. Parts of his lip and nose protruded from his little face. He would need several surgeries due to the severity of his cleft. The plastic surgeon ordered “surgical tape” to be applied to his nose and lip. The tape helps the alignment of the facial structures for future surgeries.
When newborn babies have a fast heart and respiration rate as Ray-Ray had, the doctors do not want them to have any oral intake. Instead he was fed with an IV. But Maddison was able to receive her mom’s pumped breast milk through a special feeding device called a Haberman Feeder. The Haberman is a uniquely made bottle for babies who have a poor sucking mechanism due to a structural defect or born prematurely. Maddison went home with her mom eating, drinking and pooping like a champ! Finally, after two weeks Ray-Ray had also become quite fond of his Haberman bottle and went home to his mom and dad.
A few months later , both babies were gaining weight and getting ready for their first surgery. Of course, just like any happy baby, they both exhibited GREAT WIDE SMILES (literally!) for their first formal portraits. Before most initial cleft lip surgery, parents are encouraged to “cup feed” their babies. Many surgeons believe that bottle feeding may damage the newly repaired tissue after surgery. Miss Maddison had no problem adjusting to cup feeding as long as somebody was feeding her with something! On the other hand , Master Ray-Ray made it loud and clear that he did not approve of this new way to dine! Ray-Ray’s version of a Happy Meal came in a Haberman bottle! Case Closed!
Week by week you could clearly see the improvement of in the alignment of Ray-Ray’s nose and lip due to the surgical tape applied. As previously planned, he was going to be admitted to the hospital for his ongoing (but stable) fast heart rate and respirations. But for Maddison, the big day had arrived! Maddison underwent her very first reconstructive surgery on her cleft lip. Maddison came out of surgery with the face of an angel. Many times I have had the opportunity to be in the operating room with a baby when they’ve had their first surgery. I could frequently report the ongoing progress of the surgery. Maddison’s parents were delighted to see such an enormous transformation of her little face! It’s similar to the glorious look a parent displays when they see their newborn baby for the first time!
Ray-Ray was admitted to the hospital for a further evaluation of his heart. A cardiac angiogram was scheduled. Shortly after the procedure started, Ray-Ray’s tiny heart stopped. He went into a full code but the staff was able to revive him. But the next day, his vital signs began to deteriorate. Despite the multitude of effort, skill and knowledge, they were unable to save this precious little boy. He was only five and a half months.
My phone started ringing around five o’clock in the evening, with everyone sharing the worst possible news. There is no pain more horrible than losing a child. As I entered the funeral home, Ray-Ray’s parents and family approached me and started thanking me for everything I had done for them. They told me I had given them such hope. They were THANKING ME? NO! It was the other way around! They were the true examples of hope!
The funeral home was full of family, friends and even the medical staff that had taken care of Ray-Ray. Surrounding Ray-Ray in his open casket were beautiful pictures of him and his favorite hundred toys. In his cupped little hands was his Haberman bottle—his most valued possession.
None of us will ever understand why babies die. You almost want to ask yourself “What was God thinking?” I do know Ray-Ray was here for a reason. Perhaps it was to teach us how fragile life is. or maybe it was to show us life’s intense value. Being a part of those two families was an experience in joy and sadness that I will never forget.
Little Miss Maddison has now completed first grade and she still has the face of an angel. Ray-Ray’s parents now have two healthy and happy boys. Ray-Ray’s spirit is still alive in their hearts.