This is a story I would like to share with you. If you been following the updates as of late, you will notice there have been a lot of Memorials and notices of children with dwarfism passing. It is unfortunate to say, this is not uncommon.

Medical advances have been made within the recent years and hopefully, these preventable losses will be a thing of the past. I will follow up on this in another post.

“Nathan was born on September 21, 1989 a couple weeks earlier than his due date of October 10th.

I had a c section which is what I have had with all of my kids apparently with Nathan, I retained a lot of water. My water had broken at home, and was in labor I didn’t know too much about labor but a little bit since all of kids were born C section. But when the doctors cut me open to deliver Nathan, the doctor said I was full of water he estimated 3 gallons of water.

So Nathan was born at 12:24 p.m. on September 21, 1989, weighing in at 6 lbs. 7 oz. and 18 inches long. Nathan and I stayed in the hospital the usual couple days with me having a C-section and then home we came with two sisters anxiously waiting, Tiff has already named him, her Capt Crunch no matter what sex the baby was.

Nathan’s life was a little bit slower than the girls at the beginning but I didn’t see to worried about it until when Nathan was 4 months old and had his series of shots and he stopped breathing on me so we ended up going to an emergency room and they never really could pinpoint anything wrong most of the time they would put him on oxygen and breathing treatments while in the hospital and then breathing treatments at home.

So this scenario would go on every couple months and then in March or April, they sent us over to another hospital to have someone else look at Nathan. We went up to this doctors office and the doctor talked to us for about 45 minutes and I just wasn’t too happy with his bedside manner so the doctor then said I have to go to the medical library to look up something I will be back well it was more like a 3 to 4 hour period before he came back and then when he walked in he said he was going to operate on him as soon as possible.

Well that made me nervous with him not really knowing what was going on. I felt like he was using Nathan as a guinea pig so we went home from that visit and then Nathan had an episode again where he would stop breathing or having difficulty breathing so went to emergency room again (back to where pediatrician went) and they said now that the other doctor was seeing Nathan, we had to go to that hospital. I walked in there and they said they were going to operate right away and I said I need to get a hold of Little people doctors first before anything so I got a hold of one and he suggested a friend who lived in Columbus and had worked with him would come up to assist so I felt a little better, I guess.

So they operated on Nathans magnum formean and made it larger going to the spinal cord Nathan was in the hospital this time for about 3 weeks then they ended up putting in a shunt to relieve the water in the brain pressure.

He came home from that visit in June and was back and forth for a few things and once he turned one year old he was like he was a new kid till Christmas time.

On Christmas Day, he was having a hard time again but I was trying to do my best to keep him home and not disrupt things here with the girls so waited till the day after and once again just a general clean up his breathing and antibiotics and home we went.

Then in February, he was really bad this time around so I took him to ER they were busy and told me they couldn’t admit him or anything this time because they had no room for him and I said I cannot and will not take him home so they ended up having us in a different floor from the peds floor and a long ways from the nurses’ station.

I said to myself I cannot and will not leave you down here they would never hear him crying or check on him as often as needed so the head of ICU of pediatrics came down and said no he can’t stay down here he is needed up there STAT so they changed some kids around and made room for him in ICU had me carry him up a flight of stairs and into an examining room and as I laid him down, he stopped breathing on me completely they brought him back and a couple days of closely monitoring him, he started to feed him through a tube as soon as they started that his body bloated up so on Sunday they took him down for emergency surgery to remove the blockage that wasn’t letting the liquid out of his stomach.

So on Monday, his belly was still swollen but they said that wasn’t too unusual cause of that surgery, so it was just another day. On Monday I had gone to the hospital early on that day to raise some hell since I felt like I wasn’t being told much so I ended up leaving around 3 since I had a major headache and wanted to spend some time with the girls, the doctor called me about 5 to give me an update on things they said there was some brain damage and his being on feeding tube for a long time and they just wanted me to know, so we shipped the girls off and I walked in the room and I noticed a huge change in his appearance.

I knew it wouldn’t be long so the more he struggled and the more time was passing on, I talked to the doctors about how his life would be and it wasn’t a life he would like to be in so I talked to the doctor about taking him off the ventilator and as soon as we did that he passed away (February 18, 1991) so machines were keeping him alive.

He is in a much better place now out of his pain and suffering. After his passing we had gone to an LPA convention and found out that I am a carrier of the dominant dwarf gene so we were blessed with two daughters and one angel in heaven looking down at us…”"

Monica Kehr