Aidan ~ The Miracle of life - offered through newborn screening.

This is a personal story shared by a family whose child has Congenital Adrenal Hyperplasia.

As I am sure every mother does, I can remember back as I carried this miracle of life in my belly - each day praying that he would continue to grow, be healthy, and soon join me in this world so we could conquer the future together. Some days I wonder if maybe I worried more than most moms-to-be due to pregnancy complications my mother faced or if it was just normal for every new mom to worry and pray as much as I did. From the moment I knew I was pregnant, I knew this is the one thing I had to get right. I wasn't sure if I carried a boy or a girl, what the color of his/her hair would be, or what characteristics he/she might have; but the one thing I knew for certain is that I loved this little miracle more than anything I had loved before and we haven't even met. For the first time ever I understood the beginning stages of motherhood and with each stage of my pregnancy the love for this unborn baby and my understanding of this great gift of life grew.

Besides the morning sickness that took its toll on me the first 4½ months and had to be controlled with Phenergan, my pregnancy was a true joy. Each visit to the doctor had positive feedback, the baby and I both growing and healthy. Each new discovery was beyond anything I had ever encountered, the first ultrasound at 11 weeks, the heartbeat heard for the first time at 15 weeks, each appointment offering more encouragement that everything was going to be okay. When it was time for my final ultrasound I remember being so excited to find out the gender - from this moment on I could plan out everything down to the very last detail for the arrival. What color would I paint the nursery? What clothes could I buy to take the baby home? What name would I give this child I carry? As the weeks passed my strong concerns of losing the baby pre-term passed and I was enjoying being pregnant to the fullest. At my last ultrasound I learned of the little man I carried and remember falling in love all over again when I witnessed his tiny yawn during our ultrasound session.

I wasn't sure what to expect when it came time for labor and delivery since this was my first pregnancy. I just prayed that it, too, would go as smoothly as the pregnancy itself had. I knew that being a single mom would be hard enough without additional obstacles to overcome. After 15 hours of labor, just a few hours after midnight on Friday ~ February 25, 2005, I welcomed my son Aidan W. into the world, surrounded by my immediate family and a few close friends. Aidan was slightly premature at 37 weeks, weighing just 6lbs 6ozs and 18 inches in length. Approximately 3 hours after birth he was taken from the regular nursery to NICU due to a small tear in his lung that was making it difficult (but not impossible) for him to breathe on his own.  In NICU he was placed under a hood that produced 100% oxygen for him as treatment to heal the tear. Before the evening was up, they had removed the hood and allowed him to breathe without any enhancements and the next morning x-rays confirmed the tear was healed. However, despite his quick recovery, Aidan stayed in NICU for 5 days because he did not have a strong appetite and continued to lose weight (despite the food they pumped into his stomach) along with mild levels of jaundice that required phototherapy. As each day passed I prayed that this would be the day we got to go home and comfort one another - no nurses, no tubes and wires, no monitors, just the two of us!

We were released from NICU on a Wednesday. Aidan weighing just 5lbs 8 oz at this point, was scheduled to see his pediatrician on Friday for his first well visit to ensure he was getting stronger and healthier.  While waiting on his pediatrician to come into our doctor's room, I received a call on my cell phone from the hospital's NICU doctor who cared for Aidan. I knew from the moment I answered the phone that something was not right - certainly these doctors were too busy to call and check on us - NICU was full of other babies that required their full attention. He quickly explained to me that Aidan had abnormal test results from his newborn screening required by our state, Oklahoma, and that we needed additional testing to be done immediately. Since I was already seeing the pediatrician, he called back and explained the situation to Aidan's doctor.

Overwhelmed by the news I broke down in tears and recall calling my mother for support as soon as I hung up with the hospital. I didn't understand the full nature of the situation at the time, all I knew is something was wrong, my baby could be very sick despite his healthy appearance - I feared that my initial concerns during the pregnancy were now coming full circle. Aidan's doctor soon joined us in the room and explained that he was the first baby in the state to have abnormal results related to Congenital Adrenal Hyperplasia (CAH) since the state started the screening just 11 days before his birth. Of course the state health department, the hospital, and my doctors were excited about the possibilities for research as well as the fact they were going to be able to treat my son before any signs of illness were visible. The last thing I wanted was to go back to the hospital, we were just now getting to spend uninterrupted time together. With no other options and with fear for what we had ahead of us, we went to Children's Hospital to meet with a staff of Pediatric Endocrinologists who specialized in this area.

Exhausted from the 5 days we just spent in the hospital, I faced this new challenge..... and of course so frightened by the unknown.  The doctors explained the seriousness of the disorder and the fact that I could have lost him within 4-6 weeks of birth if he would have gone undiagnosed. This happens more often in males because there are no signs of abnormal genitalia like in females to trigger the doctors, leaving many of them improperly or undiagnosed. If we had lost him, more than likely the required testing to diagnosis his genetic disorder would have been left out of any standard autopsy and I would have been haunted for life with a SIDS diagnosis for the cause of death.

Additional blood was drawn by his Endocrinologist to be sent off for a confirmatory test for the disorder and we spent 2 more days in the hospital where he began treatment for CAH and continued to be monitored. A few days after his last hospitalization, Aidan's confirmatory results came back and we were now positive he was a CAH baby.  Aidan is 7 weeks old and doing GREAT!  He takes daily medication as well as salt supplements because he is a salt-waster. Besides the additional medicine he now takes 4 times daily and the salt supplements with his feedings, our routine is as normal as any other family with a newborn.

How blessed we are that our state decided to add Congenital Adrenal Hyperplasia to the required newborn screening. Because my state chose to recognize the seriousness of getting immediate diagnosis and care with these children, what could have been a tragedy for my family and possibly the loss of my first and only child turned out to be a life saving process.  Since Aidan's birth, we have done much research online and found that there are still many states that do not test for CAH. Ridiculously, many of them cite the cost involved as one of the many offsets. Maybe, because many states only expect to diagnose 2-3 children per year, those that oppose adding CAH to newborn screening don't feel a sense of urgency?  To those individuals and states I question - What is a human life worth?  With the majority of testing facilities able to add CAH to their newborn screening for less than $3 per child, I wonder why these states put so little worth on a newborn's life. There were many in my state that opposed adding CAH to the newborn screening requirements. Should they have had their way, I may have lost my child (like so many before me) instead of being able to celebrate his life. In my case, not only did the screening allow for proper care to be given to my son BEFORE he started to get ill, but it saved our family from the horror of dealing with the death of a new and innocent life as well as the frustration I am certain many must feel when left with unanswered questions or a true cause of death.  It has offered us hope along with a chance for life that so many before us did not have because their children failed to get the proper care and lacked proper diagnosis.  Should Aidan's confirmatory results have happened to come back negative instead, I would still have no regrets about anything we had to go through to ensure he received the proper care!  Thank you to all of those who support the screening and research associated with CAH and other life threatening disorders nationwide.

My son Aidan - truly a gift from God and a miracle in the making.

Sincerely,
April

Written April 2005 by April
Mother of Aidan, Born February 25, 2005

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