Vise, Alexander Lee

[left:88b3f3a701]http://www.cherubs-cdh.org/Album/new/vise-alexander.jpg[/left:88b3f3a701]My son, Alexander Lee Vise, was born December 16, 1994 at 7:32 a.m. He is the first child of my husband, Terry, and myself. Immediately after his birth, Alex was unable to breathe correctly and was blue. Not knowing what was going on, Terry and I were very scared as the nurses took Alex out of the room. Very shortly after that, the neonatologist at Ball Memorial Hospital in Muncee, Indiana came in and told us that Alex had to be put on a respirator and was given a drug to temporarily paralyze his body. They weren’t sure of the problem, but were running some tests. Soon after, Alex was diagnosed with a diaphragmatic hernia on his left side. It was apparent after air entered into his lung cavity and his inflated bowels could be seen. Within four hours Alex was on his way to Riley Children’s Hospital in Indianapolis (one hour a way) and was given a 50% chance of survival.

As you have also experienced, it’s the most frightening news parents can hear. I had a wonderful pregnancy, even had an ultrasound at 22 weeks, and I expected a healthy newborn baby. Knowing how upset I was, my doctor released me so Terry and I could go home to pack bags and head to Riley to be with our son.

Once at Riley, we met with the doctors who told us that Alex would have his repair done once he became more stable and they told us about the possibilities of ECMO. We were so devastated. Looking around the module where Alex was, we saw preemies and other sick babies, even a baby also born with CDH that was already on ECMO. Reality hit us hard but we were ready to face anything. We felt very fortunate that we lived so close to such a wonderful hospital with an excellent staff for and our families who supported us by visiting us every day.

The first night we slept at the hospital. It was the morning after Alex was born (25 hours old) when Dr. Rescorla (Alex’s surgeon) came to our sleeping room to tell us that Alex had developed pulmonary hypertension and would have to be placed on ECMO. We signed the papers and cried. It seemed so scary, but we wanted to take our son home more than anything. We sat by Alex’s bed from 8:00 a.m. to 10:00 p.m. daily. At night we slept at the wonderful Ronald McDonald House. Alex’s surgery was done on Wednesday, December 21, while he was on ECMO in his module. There were so many prayers said that I know there were angles flying over his head protecting him. Terry and I were happy to learn that his diaphragm was repaired without a patch. We had so many family members there that day that we filled two waiting rooms. The next day, Thursday, December 22, Alex came off ECMO.

When Terry and I arrived at the hospital on Friday, December 23, the nurses asked us id we would like an early Christmas present. We got to hold Alex for the first time. It wasn’t a present of material things, but it was the best gift I have ever received. His little warm body felt so good to hold. He opened his eyes a few times and looked at me. I’ll never forget it. Alex was still on a respirator along with a central line, drain tube, heart monitor and an IV, but we still managed to hold him daily.

We spent Christmas at Riley and we were so very thankful for Alex’s daily improvement. Christmas music touches my heart so much now because of the time we were at Riley.

On December 28 Alex came off the respirator and was put on CPAP. Another big step. Everyday we sat with Alex and talked to him and sang to him and touched him. Some days were harder than others but we never gave up our faith.

The big day arrived that we were able to take Alex home. It was Saturday, January 7, 1995. We had been there for 23 days. Two days before I had begun to breast-feed him and he was nursing great. Alex got to go home though on oxygen. Alex had oxygen at home for seven months.

Alex ix now two years and five months and is doing great. We never miss a visit at Riley and we feel very strongly about ECMO follow-ups. Alex is where he should be on all developmental skills for his age.

At 15 months, Alex was at Riley for surgery on a tethered spinal chord. I have heard that babies with one defect have great chances for another one. It was true in our case. It was at a one-year check-up at Riley that I pointed out to his doctor his crooked bottom crack. Alex had an MRI and the tethered spinal chord was discovered. His spinal chord was being pulled down by lipoma (fatty tissue) which had entered into his spinal column, which hadn’t closed properly. This can affect bowel and bladder control and the growth of legs and feet. Fortunately, it did not affect his bowel and bladder control but it did affect his foot growth. One foot is a size smaller than the other. Hopefully the surgery corrected the problem so it won’t get any worse. His feet won’t ever be the same size, but it’s not even noticeable to others. Sometimes though, buying shoes is a problem! He walks normally. I am curious to know of any other CDH children that have a similar problem.

Alex has a seven-month-old sister, Sarah, who was born healthy. He is so good with her. This Sunday, June 1, is the annual ECMO reunion picnic for Riley Children’s Hospital. It is televised on a local station for about 20 minutes during the Children’s Miracle Network Telethon.

I am interested in learning anything about diaphragmatic hernias. Not knowing the cause is sometimes frustrating. Like I mentioned I am a healthy adult who had a great pregnancy.


Written by Alexander's mom, Jenni Vise (Indiana)
1997