Abigail’s NBS Success Story (MCAD)
My daughter is only 10½ weeks old so time-wise it is not very long, but emotionally it seems like it has been quite the journey.
Abigail was born at 8:58 pm on February 3rd, 2009, a day before her due date. I had originally requested to breast feed her immediately which the nurses said would be fine if there were no complications. Well Abby had passed meconium during delivery and was having trouble breathing so they took her away and put her on C-pap machine which thankfully she only had to be on for about an hour. When I was taken to my recovery room that night I told the nurse that my daughter needed to eat and that I was worried about her. The nurse explained to me that babies are born with a “backpack of energy storage” and they can go awhile without food and that she needed to recover.
She was finally brought to me the next morning but we struggled with latch on. We worked on trying to feed her all day with little success. At 3 am the next morning, they took her to the nursery because she was jaundiced and her body temperature was low. In between her billi light sessions, we would try to work on feeding some more with little luck. The lactation consultant showed us how to feed her with a supplemental nursing system until she was feeding better. Her billi levels dropped and we were about to be discharged.
I was still feeling uncomfortable with the feeding situation but knew it would be the most important thing to work on at home. During discharge my husband noticed that Abby felt really cold and was really tired. He asked the nurses to take another look at her. The nurses took Abby’s temperature and blood sugar. Her temperature was low and her blood sugar had dropped down to 24. She was then moved to the NICU where they put her on a D10 IV (thankfully) and given feeding boluses.
That night was unbelievably long. Abby looked so unresponsive and wouldn’t wake up when I tried to feed her. Over the next few days, we worked on feeding while she regained her energy. They slowly weaned her off the IV as her feeding got better. They ran several tests thinking she may have had an infection and that was why she got so sick but everything came back negative. We were able to take her home 3 days later and by then, she was alert and eating like a champ. The on-call pediatrician thought that this must have happened because she was a small baby (6 pounds) and didn’t start eating right away. We thought we were in the clear and everything would be “normal” from there on out.
Two days later we went for the follow up visit with the pediatrician. Everything happened like it was in a movie. Just as the doctor was finishing examining her and stating that she looked great, a nurse came in and said there was someone from the state newborn screening on the phone about this baby. The doctor left and came back a little while later. He explained to us that her test came back positive for MCAD. He told us he didn’t really know much about it but that we needed to make sure she didn’t go longer than 3 hours without eating. He gave us some paperwork that the NBS sent over. He told us the NBS had set up an appointment with a specialist in Salt Lake for 2 days later and that we needed to go to the hospital to have the test redone.
Now I do have to say I am very thankful that the State of Utah tests for MCAD but the paperwork they gave us to explain it was awful. As we were driving to the hospital, I read over the information they gave us. All it had was the technical definition and then a sentence with the symptoms, one of which was sudden death. Nothing explaining that it can be treated or anything!! Luckily, we have some great relatives who found the FOD Support website that same day for us so we wouldn’t be in complete despair while waiting to meet with the doctor. At the appointment we learned more about this disorder. Blood was taken and MCAD was definitively diagnosed.
It took us several weeks though to really feel like there was hope. I hope no one else ever has to go through the pain that happens when the first reading material you are given tells you your child can die without further explanation on treatment or prognosis. I feel it definitely could have been handled better. She is only 10½ weeks old but so far she is doing great. She eats well, smiles a lot and is growing quite well!!
Looking back now, I hate to think what could have happened if they had discharged us as originally planned or if they had given her a different treatment in the NICU. I know that as hard as everything was then, that it all worked out for the best. We now know that we need to be vigilant about her eating and her health. I am so thankful for the FOD Family Support Group. I have learned so much that I feel like I can better handle situations that may arise and the Group has also given me hope. Thank you so much Deb and everyone else in the Group!!