Ohio
Maria Hill
HUB Leader
I found out I was pregnant in September of 2011, it was the most exciting thing ever! I never in a million years imagined that I would have such a rough pregnancy. I went into preterm labor at least seven times before I finally had Markofe at 32 weeks. He was early because 5 days before he was born we discovered he had Gastroschisis. Markofe also had cleft lip and gum, along with many other birth defects. Markofe was born on May 1st 2012 at OSU Medical Center in Columbus,Ohio. As soon as he was born he was rushed to the nursery so that they could prepare him for the trip to Nationwide Children’s Hospital. He was born at 8:11 pm; was 17 in long and weighed 4.2 lbs. He underwent his first surgery within hours of being born. The scariest time of my life because I had no idea what was going on until the surgeon was completely done. A few hours passed and they called me to say that surgery went okay but something happened. He was originally suppose to have 100 cm of intestines and was only left with 20 cm. I didn’t understand exactly what was going on. Later discovering that Markofe had one of the more rare cases where everything that was on the outside was dead due to the hole in the abdomen wall trying to close while everything was outside. This making it completely impossible to save any of it. A week later his blood flow to the stoma was cut off and they had to go in for surgery again and cut more out this time leaving him with only about 18cm. This is where we discovered he would have short bowel syndrome or what some people refer to as “short gut” He had an colostomy bag and a mucous fistula along with a g-tube and a picc line for iv nutrition to keep him healthy. At about three months old they did a stoma take down and reconnected him on the inside making the next few days exciting as we waited around for his first poop so that we could finally start real feeds on him. Feeds were and still are our biggest battle even now at 26months old. At about 4 months old he got his lip repaired form the cleft, the gum would be done at a way later time. A week later we got moved to the step down unit (the floor which had other kiddos kind of like Markofe) to start the process of coming home, they basically said he outgrew the NICU. A month after moving the dr’s noticed he wasn’t progressing and so they did some testing and discovered dilated loops in his bowel. Thus meaning another surgery to fix it and hopefully get things going again. Surgery was life changing and at this point it was our only option because nothing else they were doing was helping or changing anything. An extremely emotional day, it was make it or break it for us. Months passed and things finally started getting better his feeds were progressing very slowly but it was going. He developed what would be the beginning stages of liver failure, it was so bad it was turning his skin yellow. The Dr’s started him on a investigational study known as Omegaven. At first we were skeptical because it is not approved in the United States, but little did we know it would save our babies life again. Halloween, Thanksgiving, Christmas and the New Year came and went and he was still in the hospital but we were so close to coming home we could taste it. The date was set for January 22nd, 2013 so he got a broviac line in place and the picc line out. Only to be told plans were canceled because he had a set back. Finally on February 13th 2013 He came home for the first time ever. Grant it we have been in and out since that day but he’s home now. To this day he has had about 10 surgeries that’s not including all the procedures he has had done here and there. He has been readmitted into the hospital 13 times some of which were a few months long admissions. His diagnosis list which is ever growing, and only one allergy as of now. He is in metabolic genetics, see’s almost every therapist known to man kind, doesn’t eat anything by mouth what so ever, and is behind in a few things. Looking at him you would never guess all of this because he is the happiest funniest baby to be around. He truly is an inspiration and immediately puts everyone at ease when their around him. He may not know a lot of words or eat or do much that a “normal” child might do but he is so smart in his own way!!! The dr’s say he may be on TPN and Omegaven along with Tube Feeds for a long time and maybe even the rest of his life. But he’s strong and can overcome this. He is a fighter!!