Moses 9/15/01-2/21/02

I gave birth to Moses when I was 19 years old, in the back seat of a Chevy Lumina (Sorry Paula!). We made it to the hospital but I couldn’t quite get out of the car, so the Doctor, Dr. Henderson, came out to me and we had a baby there. (Side note, Dr. Henderson also delivered me, and when Moses passed, he spoke at the funeral-he’s a great guy). Moses was 4lbs 3ozs at birth and was full term. It was unclear as to why he was so small, we thought maybe the placenta had stopped feeding him and decided he was just a small baby. He was on oxygen in an incubator for a few hours since he was born outside, and was small but it wasn’t long that he was in the room with me. We went home the next day and had fun dressing up the tiny baby in doll clothes.

When Moses went in for his 6-week checkup, the Doctor was alarmed, he’d only gained a few ounces since birth, most babies gain about an ounce a day. We were referred to a pediatric specialist in Amarillo, about 2.5 hrs away from where we lived. When we got in to see the specialist, he took one look at Moses and knew something was wrong. You see, Moses’ tummy was distended. I thought that big round belly was him gaining weight, it definitely was not. When people are malnourished, you will often notice a round, distended belly. I know that now, I did not know that then. He admitted Moses to a nearby hospital and we spent the next several weeks there. There were so many tests run, a feeding tube was placed – just trying to get him to gain weight. They could not figure out what was going on. One day, an intern with a thick accent came in and he had a big book in his hand. He looked at Moses a while, then showed me a photo in the book and asked me if I thought it looked like Moses? It looked just like him! The only thing I picked up from the rest of what he was saying was the word “Leprechaunism” and I remember thinking to myself that was the strangest word. I used the computer in the Ronald McDonald room in the hospital to email our family friend, Rita, and asked her to please research the condition for me. A few hours later, my parents showed up and they had paperwork in their hands. Rita had read about the condition and it was terminal. Instead of getting back to me, she told my parents who came up right away. I read the material and later that day a Doctor came in and told me they were pretty sure that that is what he had, and that he was terminal. The condition is extremely rare and at that time there had been less than 50 cases ever documented. I asked if we could go home and he said yes, they would get us stabilized and set up with home health items we would need for home and we could go home.

About Leprechaunism – The short story is these babies do not have insulin receptors and are not able to use the food they consume. They all have elfin-like features, hence the name, and all look very much alike! They have very large hands and are very hairy. They also have enlarged genitalia and have acanthosis nigricans from the blood sugar issues. They do not live past the age of 2.  You can see the website that Rita shared with my parents here if you’d like to learn more about the condition and also see what information we were presented with.

http://jamanetwork.com/journals/jamapediatrics/fullarticle/190006?resultClick=1

We moved in with my parents. Taking care of Moses was literally a 24/7 job. My dad did not sleep at night so he took the night shift and I took care of Moses during the day, Moses’ father worked because the bills still had to be paid. Moses was put on hospice care and we had nurses come to see him a couple of times a week to check on him. We just concentrated on loving him and keeping him comfortable.  He had a NG tube (nasogastric) which after going to the ER a few times to have it put in, Dr. Henderson showed me how to put it in myself to save us a trip. Any time Moses got super upset, he’d reach up and pull that tube out…little stinker. He was fed continuously to try to keep his blood sugar stable and we added Canola oil to his formula to help give him extra calories. He was on quite a few meds, some for pain, some to help with his stomach since he had the NG tube. He was also on a nebulizer to keep his lungs clear since any sickness could be fatal to him. Even though that was the case, I still took him out with me to the store etc. I felt like his life was short, and he should at least get to live it some…and honestly, I needed some normalcy for myself also. Moses absolutely loved his nebulizer, the sound was calming to him, at one point we ended using an ice cream maker for the noise also so we wouldn’t wear out the nebulizer. He also loved an Elmo toy that his father had bought him. He would sing and coo along with it and we played it constantly for him.

We made an appointment with a specialist in Amarillo to see about getting a MIC-KEY* button put in. This would mean the tube would go straight in a port in his stomach and I wouldn’t have to put it down his nose anymore and he wouldn’t be able to pull it out. The day of his appointment, he seemed to have a cold, but I didn’t want to cancel the appointment because we had been waiting a while to get in and also, I was ready to have the button. When the surgeon came in to look at Moses he said, “This baby is dying”, I told him, “well yes, we know this but we still want to see about getting a button” and he told me, “no, he’s dying right now”. I was shocked. He looked him over and said he was in distress and I told him we had DNR orders and he told me he was calling an ambulance because he was not going to have him die in his office. This was such a shock, I had no clue that would be the last day I had with my baby. We took the ambulance ride across the street to the hospital and his geneticist and other doctors came. He was in congestive heart failure and it was the beginning of the end. They stabilized him, put him on oxygen and gave him morphine so he could rest. His nurse Apryl (we knew so many of the staff by this time) discharged us and when we got to the car she told me not to put him in his car seat, she told me to hold him all the way home and spend time with him. I will forever be grateful to her for that. We sped the 2.5 hours home. I was with my mom, his father and my dad were at home and we knew if they were going to see him alive we needed to get there quickly. We stopped at a police station and told them what was going on and gave them copies of the DNR, they told us they would call ahead but they we could still get stopped for speeding…we never did. We pulled up to the house and family was waiting outside, I handed him to his father and he opened his eyes, closed them, and was gone.

We had an autopsy performed so we could learn more about what was going on with him, and also sent tissue and organ samples to a group in Utah that was doing a study on Leprechaunism, unfortunately, that study ran out of funding and I’m not sure it was ever completed.

He lived a short 5 months and 6 days, but taught me SO much and really is a big part of who I am today, If you ever want to learn more about him, ask! I love talking about him.

 

This entry was posted in bereavement.

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