Friday, November 20, 2015

November 20 - Dear Nicholas Sparks (Guest Blogger Theresa Hohman)

Dear Mr. Sparks,

My due date with our second child, Tierney, was January 24, 1992. My pregnancy was very normal in all respects and I had the usual ultrasound at 20 weeks with no abnormalities shown. January 24 came and went with no sign of Tierney coming into the world yet! At 41 weeks I had another ultrasound and a stress test that indicated no problems. On February 3 I went into labor and after a fairly short labor Tierney was born. Tierney, at 6 lbs. 12 ounces, was smaller than we expected for an overdue baby but appeared perfectly normal and had very good Apgar scores. 

On the morning of February 4 I was getting ready to go home when our pediatrician came in to see me. He said that a nurse thought she heard Tierney’s heart on the right side rather than the left and therefore they had x-rays taken of her chest. He pulled the x-ray out and showed me that her heart was indeed on the right side of her chest and her intestines were where her heart should have been. I asked him what this meant and he said he had never seen this before but that a surgeon would be in to see me. I was devastated! 

The surgeon, Dr. Croitoro, came in and told me Tierney had a diaphragmatic hernia and needed an operation to repair it. I was more than upset and very confused but Dr. Croitoro assured me that Tierney was very lucky because her lungs were perfectly okay. He said the hernia may have been caused very late in my pregnancy and he even discussed viewing my ultrasound to see if it was apparent at such time (I don’t think he ever did this). 

Tierney’s operation to repair her diaphragmatic hernia was performed by Dr. Croitoro on February 5, 1992. The surgery went well and Tierney recuperated in the PICU. She looked so relaxed and I can remember her sucking her tongue in her sleep. Tierney needed very little medication and was sent home earlier than expected on February 9, 1992. 

The 1st 6 months of Tierney’s life were pretty uneventful. I breast fed her and she thrived very well. She did have a tendency to vomit on occasion but I thought it was from overindulging herself with milk. When Tierney was 6 months old she started to have bouts of severe vomiting and abdominal pain. After several visits to our pediatrician and finally a visit to the hospital for dehydration, we were told she had reflux and she was put on two different medications. We were relieved to hear a diagnosis and to have a solution to the problem. Our relief was gone shortly as she started vomiting again and her pain seemed to intensify. We spent many nights walking with Tierney as she only seemed comfortable when you held her upright and she did not like us to sit down. I even took her for late night drives in the car because my back would ache from carrying her. We had monthly visits with the Pediatric Gastroenterologist (PG) that diagnosed her with reflux and he assured us that Tierney would eventually grow out of having reflux. Many times I discussed her CDH with him but he said there was no correlation between her CDH and her current problems. Tierney’s weight gain was very slow and she became a very picky eater. We would go for a week or two with no problems when suddenly she would vomit for a few days in a row and would be extremely uncomfortable. On Tierney’s “bad days” she would sometimes hold a cookie (that she would normally love to eat) in her hand for hours on end! She knew she would like to eat it but she couldn’t because she felt so lousy! 

We continued to see our PG and Tierney had X-rays, ultrasounds. Upper GI’s, Lower GI’s etc. but nothing was ever seen to be abnormal. Tierney was put on IV liquids a few times for dehydration and was even hospitalized for a few days right after her 2nd birthday but the diagnosis was the same – REFLUX. 

In September of 1994 Tierney experienced a severe bout of vomiting and pain. She couldn’t even brush her teeth without vomiting. Her pain seemed to come and go and was so severe she would tighten up her legs and be straight as a board and then when she had a little relief her eyes would roll back. Perry and I decided we needed to get her to the hospital. Tierney was admitted but they had to rule out appendicitis and other things so they couldn’t give her pain medication. She was in such pain and no one seemed to know what to do so we finally called Dr. Croitoro’s office and they sent Dr. Donald Nuss to see her. He reviewed a recent upper GI and determined that she may have blockage caused by adhesions and she needed immediate surgery. 

Dr. Nuss operated on Tierney the very same night he examined her. After the operation Dr. Nuss told us Tierney was a very sick little girl and that her threshold for pain must be extremely high because she had a volvulus. Apparently her intestines never adhered to the stomach wall after her CDH repair and they were twisting and turning until they finally tied into a complete knot that could not untwist. Dr. Nuss told us that Tierney would have died if he did not perform the operation. Tierney was closely monitored in the PICU and after 24 hours Dr. Nuss operated again to perform a resection on her intestines. Tierney spent a few days in the PICU with a tube through her nose to drain the “gunk” in her stomach and was later moved to a regular room. After 2 weeks Tierney was well enough to go home. 

Tierney sometimes complains of stomach pain but for the most part she is a happy, healthy, well-adjusted child. We had one bad scare a few months after her surgery with severe abdominal pain but we found she had eaten a large amount of peanuts and she suffered blockage from the peanuts that she could not digest properly. We don’t allow her to eat peanuts but other than that she eats a normal diet. Tierney is now eight and is in second grade. She is on a swim team, participates in Brownies, Soccer and Basketball. In addition to Tierney’s older sister, she has two younger sisters and one younger brother. After reading several other stories we realize we are very lucky but we hope the potential for intestinal problems is not overlooked by doctors of CDH survivors in the future. We know Tierney could have been spared a lot of pain if a connection could have been recognized earlier in her life.

Written by Tierney's mom, Theresa Hohman (Virginia)

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