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Katelynn's Story

by Karen Parker
Parent of CAH child

Katelynn Leigh Parker was born at 9:58 am, August 13th 1991 weighing in at 8 lb,, 2 oz; 22 inches long. Her birth was the result of 5 long years of infertility and 2 years of extensive infertility work at the U.S. Navy's fertility Clinic at Bethesda, Maryland. She was very much a miracle baby for her parents, Keith and Karen Parker. Soon after learning I was pregnant, my husband left the U.S. Navy and we moved back home to Texas. I am thankful for this move, because Maryland does not have Congenital Adrenal Hyperplasia as a part of their newborn screening test. I cannot help but think things would be different for us if she was born at the small Navy dispatch Hospital in rural Maryland.

My pregnancy was an easy one. There were no unusual problems; I never even got sick. Once in Texas, I located an OB., Dr. Ted Preston at Harris-Methodist H.E.B. He was a wonderful doctor with a very soothing bedside manner. I remember during the ultra-sound him noting that he would only predict a girl at 70% because he could not make out the entire vagina, he told me not to paint the bedroom pink yet. On August 12th, during my weekly doctor visit, he sent me on over to the hospital to check in. After driving at 90 m.p.h. with emergency flashers on, my husband arrived at the hospital, a thirty minute drive reduced to about fifteen. The rest of my family arrived later; even my in-laws from Abilene arrived before Katelynn did. Eighteen and one half hours later we had our baby.

Delivering Katelynn was not easy for me, but with the vacuum extractor, forceps, and all the effort I could muster, I did it. I had been rushed from the beautiful delivery room the hospital offered into the OR for a possible caesarean. That was scary enough for me, and the fact that everyone was huddled over my baby, not saying anything was scaring me even more. It was not like I had seen on TV where they pass the baby to the mother after birth. The nurses were inspecting my baby and being very quiet. I asked is she OK? What is going on? What are her APGAR scores? Keith was a nervous wreck, he was watching the nurses. Dr. Preston told me we had a girl, however, there was a little extra skin on her genitalia. The nurses were checking her completely. Later on that day our pediatrician, Dr. Antonia Bronstein, told us there was a problem. Because of the way we were feeling, her message came across like a message of doom. We were to check out of this hospital the next day and go immediately to Cook-Ft. Worth Children's Medical Center to see a specialist. Dr. Preston came by later that evening and told me what the problem was, most likely, and the newborn screening would give us the definite answer soon. We were scared, we had never heard of Congenital Adrenal Hyperplasia.

We had an afternoon appointment with Dr. Cassandra Matustik, Pediatric Endocrinologist at Cooks-Ft. Worth Children's Medical Center. She explained C.A.H., 21 hydroxylase salt-losing type, to us in an easy to understand way. Dr. Matustik has a very down to earth type personality and sense of humor to match. I immediately felt comfortable with her and her nurse, Jan Droke. We were allowed to take our baby home for the night, but were to have her back to check into the hospital early the next morning. Keith and I took turns holding our little baby girl. It was hard for us to put her down. We were so scared of what was to come.

We spent the next 11 days at Cooks. Nurse Jan brought me a booklet on C.A.H. and a booklet on giving intra-muscular injections. Every morning they took blood from Katelynn, and monitored her "diaper output". They did an ultra-sound on her to check her female organs and the size of her adrenal glands and probably other things I don't know about. Keith and I were very happy when they did find the normal female organs. Dr. Matustik assured us she was a girl from the beginning, but at Harris H.E.B. it was proper protocol not to define a sex for a child with genital ambiguity. In fact, they would not release the birth certificate until the chromosome test came back. This was probably the most upsetting part of the experience, other than the initial fact that our child was not perfect. Dr. Matustik sent me a visitor, Karon Watson. Karon has a son with C.A.H. She gave me comforting reassurance that my baby was going to be just fine - news I wanted to hear, but still could not fully except. We also spoke with a pediatric surgeon, James P. Miller, who explained techniques in the corrective surgery Katelynn would need. Jan taught me how to give intra-muscular injections. She brought me an orange, a few syringes and a water-filled vial to practice with. I gave Katelynn an injection when she was 4 days old. I did not feel ready, but they insisted I do it. I guess if they waited until I was ready, they knew it wouldn't happen. I do not know who cried more, me or the baby. We were sent home from Cooks with a newborn baby, a sodium solution, Florinef pills, and a vial of Cortone Acetate and box of syringes. We were to give her an injection every third day, a daily Florinef pill dissolved in a little water, and 6 doses of sodium solution a day. We were scared.

Our first few months were filled with trips to see the doctors. Dr. Matustik for the Endocrinology check-ups, Dr. Bronstein for normal baby "stuff", and Dr. Miller for the corrective surgery work- ups. Everything went very smooth. Katelynn progressed as a very healthy baby. Dr. Miller did the first of two surgeries at 3 months. The surgery was scary for us. (This was the clitoral reduction and cut-back perinealplasty.) Dr. Miller did a wonderful job and everyone at Cooks seemed very pleased with his work. Katelynn came through the surgery just fine. She seemed to be more irritated at the I.V. line than her soreness from the surgery. I think we stayed four nights at the hospital. The second and last of Katelynn's corrective surgeries was done at age two. This was to make the vagina opening. Once again Dr. Miller did the work and everything went well. So well, we only stayed in the hospital one night. The next morning Katelynn wanted to go to the toy room she had seen in the hospital. Dr. Miller had to come looking for us while on his early rounds. He said when he has to come looking for his patients, they are well enough to go home.

Katelynn has been very healthy. At eighteen months she was taken off the injections and put on 3 times a day dose of Cortef tablets. She is a very active little girl. She is also extremely bright and her parents think she is very beautiful. She has been just under the 50th percentile on growth, at 39" and 33 lbs, with close to normal bone growth. We see Dr. Matustik every three months. Katelynn is weighed and measured and blood work is done. Once or twice a year we go to radiology for the bone age x-ray. Dr. Matustik seems very pleased with her development. We have had three trips to the emergency room. The latest of the E.R. trips was probably the result of a worried mother, a child with a bug, and T.V. and newspaper reports of meningitis in our area.

Katelynn will start her third year of pre-school this fall. She takes ballet classes, and has a playdate with a group of friends once a week. We just recently started roller-skating and are planning swimming lessons this summer. She has a very active life, and she likes it that way. She thinks she can read; is a wiz at puzzles; she is starting to tell knock-knock jokes, and she can write her name forwards and backwards. She is looking forward to her 4th birthday party in August at the new waterpark, NRH2O.

I almost forget there is anything wrong with Katelynn. She is just like her friends in everyway except she takes medication, and maybe her mother worries a little more. I think having newborn screening, good doctors, and parents willing to educate themselves to C.A.H. is the secret in keeping these children healthy. I am always aware of her health. I probably take her to see Dr. Bronstein more than parents of normal children would. I know the doctor understands; she never makes me feel like I am wasting her time with something minor. Katelynn wears a Medic Alert bracelet on her left ankle; she has since about 1 month of age. I think it is an absolute necessity. She isn't aware of it most of the time, and it has caused a fashion trend at her school. My intention in writing this article is for parents of newly diagnosed babies with C.A.H. to know that their child, with proper care, will be just fine. I wish I could bring my child to visit every new C.A.H. parent; I just know it would ease their mind.

Last updated November 22, 2010