Edwards, Cole Benton

Thank you so much for sending me some copies of your wonderful newsletters! I am sorry that it has taken me so long to respond, but we are truly interested in your organization. I received your newsletters and the next day our son Cole was diagnosed with bilateral profound hearing loss. We have been really busy fitting hearing aids, learning sign language and reading, reading, reading! I have read and reread the stories and research you published and it all sounds so familiar. It surely is a comfort to know that there are other families successfully dealing with the effects of CDH… we can learn so much from them! Our story sounds strangely familiar to many of the ones I read, but I will share it with you.

In December 1994, we found out that we were expecting twins the following June. I had a previous miscarriage so this news was a wonderful blessing! We live in a small West Texas community and the news and excitement soon spread. Our friends and family were surprised and almost as excited as we were! I had a fairly uneventful pregnancy with the exception of taking maternity leave from my elementary teaching job to rest more at the request of my obstetrician. We had several sonograms and all seemed to be progressing right on schedule…we also found out that we would probably be expecting fraternal twin boys! We busily prepared the nursery and bought "two" of just about everything! On May 14, after our baby shower, my water broke at home and we immediately called the doctor who suggested we come on to the hospital. Once we arrived, the doctor confirmed the fact and admitted me to the hospital where I was restricted to absolute bed rest! They began administering medication to postpone the early delivery and we continued to have two more sonograms which showed the babies doing fine. On the morning of May 18, nature overruled modern medicine and I delivered the boys 6 weeks early. Brett was delivered first and weighed 3 lbs 14 ozs and about five minutes later, Cole arrived weighing 4 lbs. I knew immediately that something was wrong. Brett was crying and screaming and Cole was not making any sound. They quickly whisked the boys away to the NICU unit with an initial diagnosis that Cole had probably just swallowed some amniotic fluid. I wish it had been that simple. Within the next hour, we had a confirmed diagnosis of a severe left-sided CDH. We had never heard of a CDH and certainly never dreamed it would affect one of our children. The doctors informed us that Cole would need emergency surgery in order to survive. The only pediatric surgeon was in another hospital less than a mile away so the doctors and nurses prepared to transport him. The transport team stopped by my room on the way out so that I could see Cole. I couldn’t get a very good look through the walls of the transport incubator and I wasn’t allowed to touch him, but I could see that he was beautiful! My husband went with Cole and I encouraged our family and friends to go to the other hospital as support during the surgery. I made numerous trips to the NICU to see Brett during what seemed like countless hours as we awaited news on Cole. My heart felt as if it were ripped in pieces. I felt such happiness and relief that Brett was doing well and such sadness and fear that Cole wasn’t. The surgical team gave Cole a 2% chance of survival and with the help of God, he beat the odds! Immediately after surgery, Cole was placed on ECMO and we knew that the next few hours and days would be crucial. (Cole is the smallest baby our team had every placed on ECMO, which made the outcome even more unpredictable.) The next morning, I was allowed a temporary pass from the hospital to go to the neighboring hospital to see Cole. I will never forget the overwhelming feeling of seeing that tiny body being overpowered with so many tubes and such big equipment. I remember the low rumble…almost vibrations…of the ECMO machine. The room was filled with doctors and nurses monitoring Cole’s progress and the operation of the equipment. After five days on ECMO the cannulas were removed and Cole was placed on a high-frequency ventilator under minimal stimulation conditions. He progressed slowly but steadily from that point and after two months in the NICO unit. Cole made his first trip home!! Now, almost two years later, Cole is doing good. He is developmentally behind, but we have seen slow and steady progress in that area. He did not sit unattended until 12 months, and began crawling at 16 months. He is now pulling up to stand and walking around furniture. Actually he is walking just about anywhere as long as there is something to hang on to! He has been admitted to the hospital with a couple of cases of pneumonia and an occasional bout of bronchitis. He had a Nissen and a Pyloroplasy done at the age of 10 months to repair a severe gastro-esophageal reflux. Cole has a g-tube that was placed during the reflux repair and I regretfully report that he still has it. Cole is NOT a good eater…actually he hardly eats by mouth at all. Many doctors attribute this to "oral defensiveness" and concede that he will eat when he is ready, but that is not quite fast enough for me! We battle every day to get him to eat by mouth and we have even scheduled an appointment with a speech therapist for extra help. Cole is under weight and I think that has a lot to do with his slow developmental progress…he doesn’t have the strength to be too active. Cole also has a profound hearing impairment that has been attributed to either the ECMO or some of the antibiotics he had to take when he acquired a critical staph infection (Gentomyacin in particular). We are very thankful that Cole did not have any bleeds while on ECMO although a subsequent MRI revealed a small amount of damage probably due to trauma at birth and specifically diagnosed as very mild spastic diplegia. The location of the damage may have an affect on lower body motor skills, although our therapist assures us that Cole will walk, run, jump, and play. Well, it certainly has been a long road, but not one without many rewards! Cole is a wonderfully happy toddler that brings sunshine into our life everyday! Brett and Cole interact and usually play nicely together…I think their special brotherly bond will be especially beneficial to Cole as he begins to imitate the things that Brett does. Brett may be one of his best teachers and therapists! My advice to the new parents of a CDH child is to (1) ask questions even when they may appear to be stupid, (2) write things down in a journal (3) use your judgement because you know your child better than anyone else, and (4) love you child unconditionally!!



Written by Cole's mom, Sharla Edwards (Texas)
1996