Family Stories

Maisyn's Story (CACT)

On August 9th, 2012 at 10:16 AM, a beautiful healthy (or so we thought) baby girl was born. Maisyn's father and I immediately fell in love with her. She was our first child and we couldn't ask for a more perfect baby girl. The nurse let me breast feed her as soon as she was cleaned up and when she was done, she was taken to the nursery for her routine tests. The nurse came back and told me that everything was great but her blood sugar was a little low (30's). She asked if it would be okay to give Maisyn a bottle to boost up her sugar and I immediately gave her permission. The bottle helped bring it back up to normal range and she was brought to my room shortly after.

We had a great day with her and I chose to keep her in my room that night considering the fact that I would be breastfeeding her anyway. Around midnight, I tried to feed her but she was very lethargic and would latch on but wouldn't suck at all. The nurse came in to check on her and I explained to her what was going on. She went to get a pump for me and I was able to pump enough to give to her some in a bottle. She took the bottle with no problems and fell back asleep. The nurse left us alone for the rest of the night.

The next morning the nurse came back to do more routine tests and from that point on I kept pumping and she was taking everything I would pump by bottle. They checked her blood sugar and it was back low again. This time I believe it was in the 20's. It was almost time for her to eat again so they waited for me to feed her and they checked her blood sugar immediately after she ate. It went up but was still low. It was in the 30's again. The nurse had to take her from me and bring her in ICU to put her on IV fluids until they could figure out what was wrong. I was completely devastated. What I didn't know is that this was just the beginning of the worst nightmare I have ever experienced.

The ICU Drs called my husband and I into ICU to let us know what was going on. They ran numerous tests including a spinal tap. They thought she had a bacterial infection. Everything came back negative and they could not figure out what was wrong. Meanwhile, she started improving and her blood sugar was staying in normal range. On the third day, the doctor lowered her dose of IV fluids and started letting us bottle feed her 30 ML. She would take the entire 30 ML in 5 minutes with no problem at all. All her tests would come back in normal range except for her ammonia levels. It was always elevated but at that point she seemed perfectly fine and would eat really well and also cry very loud. The doctor didn't believe the test results were accurate. On day 4, she was finally taken completely off the IV fluids and we started feeding her 60 ML every 3-4 hours. The doctor passed by and was still not sure about her ammonia levels. She told my husband and I that she would take a urine sample and a blood test and have it shipped to a geneticist’s overnight. If those test results came back good, we would be able to room in with our daughter the next night and finally bring her home. We were THRILLED!!! We stayed with Maisyn in ICU until midnight so that we could feed her before heading home. As usual, she did really great with her bottle and was in a good mood.

On day 5 at 5 AM, I was awake pumping and I received a phone call from the hospital. It was the nurse practitioner asking us to get to the hospital as soon as we could. Maisyn was in cardiac arrest. We rushed over to the hospital which is a 45 minute drive from home. We got there and there was someone waiting outside of ICU to take us in immediately. My heart dropped. I asked the nurse if my daughter was still alive and she wouldn't talk to me. She brought us to Maisyn's bedside and she was just lying there with respiratory nurses all around. She was in cardiac arrest for 45 minutes and her ammonia levels were 700+. We don’t exactly know how high her ammonia levels were because at that particular hospital the highest number they could test was 700. It took a while but they finally got her stable. She was still in very critical condition and we were told she might not survive. She was transferred by Air Med to Tulane Hospital in New Orleans, LA (approximately 2.5 hours from home) where they have a genetic team. She was at Tulane for approximately 5 weeks but the genetics team there was awesome and were able to figure out her diet and disease.

She has CACT and as of 2010, there were only 30 reported cases. It affects 1 in 250,000 children. A lot of information is still unknown about this disorder but considering how great Maisyn is doing today, I truly believe we can get through this. She is now 4 months old and is meeting all of her milestones great considering the fact that she went into cardiac arrest. We were told we would have to monitor her development and growth very carefully. She rolled over for the first time at 2 months old and I cried! She is such a blessing to our family and I thank God every day for blessing us with a little miracle.

Krystal Boyer
Mom to Maisyn- 4months old-CACT
klrobin@hotmail.com
Louisiana