30 Days in the NICU
The day after she was born the nurse told me that she had thrown up her milk a few times. They eventually got an X-ray and it was then the doctor came to me and said that it looked like she has an obstruction. They needed to transfer her to Denver Children’s hospital to do surgery. Maliyah went into surgery at 11 that night and after it was done the surgeon told us that there was no obstruction. This was puzzling as she had all the signs for one. This was the first sign we had of her diagnosis.
They told us it could possibly be a handful of diagnoses ranging from Hirshsprungs to a rare genetic mutation with an incredibly long name called Megacystis Microcolon Intesitinal Hypoperistalsis Syndrome (MMIHS) that had a horrible prognosis. After a week of ruling out all the common possibilities everyone was pretty sure it was MMIHS. Maliyah had every single symptom described. She had the enlarged bladder detected at first from an ultrasound in utero. She had what they called a psuedo obstruction - meaning they thought she had an obstruction in her intestines but there was none. She wasn’t able to tolerate any breastmilk and would throw up green bile. And she wasn’t able to poop. We sent off a genetic test to confirm the diagnosis and then we just waited. We read every possible medical article there was out there on MMIHS. Unfortunately the medical literature out there was very limited and outdated. According to the literature Maliyah’s prognosis was very poor - leaving us with 3 very undesirable options. The first option was that she would never be able to eat food and would lead a life completely dependent on TPN. This would cause her liver to fail eventually leading to a liver transplant. The second option was to have a 5-7 organ transplant including the small and large intestine, stomach, pancreas, liver. I didn’t even know that they did that they were capable of doing something like that. The third option was to take her home on palliative care/hospice. This disease was so rare that no one in the NICU had every treated it except for one GI doctor, and he had only seen it once ever before in his 40+ year career.
Every day in the NICU we tried to feed Maliyah. Every day she would throw up bile - which meant that nothing was moving in her intestines. She was on TPN 24 hours day, antibiotics every 6-12 hours, and a indwelling foley catheter. I remember walking in the NICU every day and seeing all these babies. I saw many of them go home. I realized that Maliyah may never get to go home.
I also remember not being able to go into the partially prepared nursery in our home. We had all these gifts and things that people had lovingly sent for Maliyah that I didn’t know if she would ever use. I had to close the door because I couldn’t handle it at that point. It was too painful to think that she would possibly never sleep in her room.
June 2nd - our good friend and pastor Ruddy Vivanco came and anointed Maliyah with oil at 5pm. It was a special time to put our trust in God and to petition to Him for the healing of our daughter. We were well aware of the fact that His answer could be healing now, later, or at his resurrection when all pain and suffering would be taken away. I remember telling the doctors that if God were to heal Maliyah that every one would know that it was Him because there was no cure for MMIHS.
June 5 - Maliyah started to tolerate breastmilk and pooped for the first time ever! We started going up on her feeds and down on her TPN. For the next 5 days she tolerated more and more milk and pooped every day! The doctors were speechless. According to the medical articles this wasn’t supposed to happen.
June 11 - The plan was to turn off TPN that night and to be solely on breast milk. We also talked with urology to see if we could see how she did with the foley catheter out. There was even talk of possible discharge by the end of the week!
June 12 – Maliyah started to throw up again in the night and did not tolerate any more milk. This was definitely a disheartening day.
June 13 – They restarted TPN. Over the course of the next couple of weeks we tried to reintroduce feeds but she just didn’t tolerate it. She would usually be fine during the day and then throw up bile at night. She also stopped pooping. The doctors had no idea what was going on.
June 22– This was the day that we received Maliyah’s genetic results. As quoted from the Geneticist’s notes “ Genetic testing reveals she is positive for a known pathogenic variant in the ACTG2 gene (heterozygous c.769C>T, p.ARG257Cys) which is consistent with a diagnosis of Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS). This most likely a de novo (new) genetic change in Maliyah.” Meaning it was not past on from either Adam or myself. We were devastated to say the least. Adam and his mom had gone down to spend some time with Maliyah, and I had stayed home to take a break and get some rest. I wish that we had been together. Adam called and told me that the genetic test was positive. Maliyah had MMIHS. It was like the world stopped moving for a moment and things just felt fuzzy.
