Maddie's Story: Parent's Letter ProjectIntestinal surgery - Maddie's dad

Children's National Health System

I vividly recall the 20-week ultrasound. My wife and I were having twin girls, and all was going well with them until we heard the words, "There is an anomaly in the intestines of Baby A." The words hit extra hard to me, as I was born with an anomaly of my intestines, which led to me spending the first three months of my life in a Neonatal Intensive Care Unit (NICU). I could not imagine my daughter Maddie going through the same thing. I never would have guessed that my own medical history would help lead us to Children's and its wonderful team.

The night of the ultrasound, I reached out to my pediatric surgeon, who referred me to Dr. Kurt Newman. Even though he was head of surgery, and could have been doing many other things, Dr. Newman took the time to meet with my wife and me, to walk us through the details of the surgery. Every question that I had, he answered, and every e-mail that I wrote after meeting with him, he patiently responded to. Dr. Newman was fantastic.

I will never forget the day my girls were born. Maddie came first. Soon after she and her sister, Anna, were born, they were moved to the NICU at a local hospital and then onto Children's. Maddie decided to stop breathing, so when I next saw her in the NICU, she was on a ventilator. I remember waiting that morning until I met with the surgeon, Dr. Cindy Gingalewski. She was so patient with me. She walked me through what she and her team would be doing, and then called me (I had taken refuge at a friend's house to get some sleep) after the initial barium test revealed a jejunal atresia. The surgery happened that day, and within 24 minutes was done.

Right now, you are probably dealing with lots of mixed emotions. You are joyous your new baby is born, but frustrated, sad, and/or upset that he or she is in the NICU dealing with an abnormal intestine. I can tell you that the staff in the NICU is amazing, and that you should rely on them as often as possible. You will be able to talk with your child's nurse 24/7, and you should take advantage of that. Try to call at a time after the shift has changed so you can get more information on your child (I usually tried to call around 10 am). Make sure that you or someone close visits your child on a regular basis. Parents have unlimited visiting hours, so even if you can only make it after a long day of work, try and get to Children's for a little time. The 15 minutes you spend with your child will make you forget that long day. Finally, try and be patient. I remember how in the early days the reports were pretty much the same – she had stuff coming out of the tube in her stomach and she wasn't eating. After a while, I got impatient, wanting her to eat. All of the staff, the nurse practitioner, the nurses, said for me to stay patient, that she would eat when she was ready. And let me tell you, once she started eating, she didn't stop, and was soon heading home.

I am certainly bummed that Maddie had to spend the first 24 days of her life in the NICU, but I could not think of a better NICU for her to spend it at than Children's.


Maddie's Dad, John

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