Welcome to
Jennings' Legacy

Jennings was born on November 7, 2023. He was a perfect, healthy boy. He spent 24 hours in the hospital and was doing great. He was released to go home on the evening of November 8th. The first night home, he was fussy and didn’t really have a desire to eat during the night. The next morning he was much fussier and, as the morning went on, his breathing became shallow and labored. He was taken to the hospital, where he was minimally responsive. The decision was made to transport to OU Children’s hospital. He finally arrived at OU shortly before midnight, where doctors began an immediate assessment. Results of tests indicated that Jennings had Citrullinemia Type 1, a rare metabolic disorder. With this disorder, protein isn’t broken down and causes a build up of nitrogen in the form of ammonia in the blood. Doctors and specialists worked on Jennings for the next 12 hours, but were unable to save him. Jennings passed away shortly after 2:00 pm on November 10, 2023.

Jennings full story will be written at some point in the future, after some healing. Losing him has been absolutely the hardest thing the family has dealt with. But the worst part has been finding out that he could have and SHOULD HAVE lived.

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When a baby is born, blood is taken (PKU) and tests are done to detect abnormalities. In Oklahoma (and many other places, as we are finding out....we are still doing research) samples are obtained and then sent, by courier, to a singular lab, sometimes several hours away, to be tested. Jennings had already passed, days later, when the call was received that his bloodwork was abnormal.  Samples are taken 24 hours after a baby has eaten for the first time.  Had the results been expedited, he would have been placed on a special diet and medication. Our goal is to change this. We are gathering information and will be meeting with representatives and health officials to find out how to make sure this never happens again.  No one should have to lose a child because of a lack of medical equipment or testing facilities. There will be ways that each of you can help along the way, but for now, until we have more information, spreading awareness is key.

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Update as of July 2024

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We realize it has been awhile since there were any updates. We have learned a lot, as of late, and we are switching gears. So here we go.

We were invited to, and attended, the Newborn Symposium in Norman in May. We have been in contact with people from the testing facility, pediatrician(s), the President of the NUCDF, as well as others who are involved with newborn care. The following is what we have learned and how we will move forward with Jennings’ Legacy.

We have learned that when a baby is born in the hospital, they are fed and cared for as normal and the newborn screening is done once the baby is 24 hours old. Those samples, along with samples from the other babies in the hospital are couriered to a single testing facility. That testing facility has a 7 to 14 day turnaround time. The Oklahoma testing facility processes around 50,000 samples per year. The screening involves checking for OVER 50 disorders. ALL states follow these same guidelines. We asked why there are not more facilities and we learned why. These facilities are extremely expensive. The machines used to test the samples are larger than refrigerators and highly specialized. The lab technicians are highly educated and experienced. Testing these samples is not as simple as you might think. It is highly involved. We were able to hear from people in the lab as well as watch a video on how everything is done, so we have a better understanding as to why there are not more testing facilities. We did, however, learn that our facility in Oklahoma is only open five days a week. We had the opportunity to speak with a pediatrician in Oklahoma City, who, along with us, would like for the lab to be open seven days a week. Time is of the essence for many of these disorders. It may not seem like it, but those two days can make a life or death difference for a baby. So this will become one of our new goals; having a testing facility open seven days a week with shorter turnaround times.

Secondly, we found that there is not enough education for new mothers as to what the screening entails. Most mothers do not even know what the test is for or why it’s being done. As a result, we have found that mothers are opting out of the screening, not realizing that some of these disorders can cause the death of their child within days. Educating new mothers is now on our list of goals. We want as many babies tested as possible.

Those two things will take time and we hope to make those changes, but in the meantime, our priority has changed slightly.

When Jennings was taken to the hospital, unresponsive, the hospital followed their protocol. I can honestly say that the local hospital did what they were supposed to do and did it well. However, we have become aware that most hospitals immediately look for infection. Jennings was at the hospital at 3:00 in the afternoon and finally arrived at OU at midnight for a lumbar puncture to see if he had an infection. Hospitals do not automatically check ammonia levels. As a result during the time that he was at the local hospital, he had a mild sucking motion, so he was continuing to be fed. He was fed through a syringe. We had no way of knowing that being fed was making him sicker. The nurses had no way of knowing. We will be working with NUCDF to change hospital policy where ammonia levels are checked on newborns brought into the hospital. We will never know if that would have saved his life, but we definitely would’ve been 12 to 15 hours ahead on a treatment plan, had we known.

There will be much more to update as time goes on, but we wanted to provide a little insight into what we have had going on recently. We will be setting up meetings with anyone who we believe can help us to make a difference and appreciate everyone’s continued support.

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