Boone Begner


booneOur baby Boone was born in March 2013 but entered this world with some real medical challenges. But our Boone is a fighter. He spent his first four months in the University of Iowa hospital. Finally, after having open heart surgery our darling baby was strong enough to come home.

The problem is that the bills we now face are overwhelming. We are asking for help from our families, friends, and the community. If you feel moved, we would be most grateful for your donation to help.

Read about Boone's amazing journey below.

See pictures from Boone's journey here.

Thanks from the bottom of our heart for the love and support you have shown our family. We are forever grateful.

With love and gratitude,

Jay and Lisa Begner

 

Boone's Story

Boone Begner was born March16, 2013 at the University of Iowa. He has Heterotaxy Syndrome. This
syndrome affects 4 babies out of a million births each year. It has varying degrees of severity. Boone is considered to have it moderate to severe. When our chromosomes matched up they turned, Boone's turned the wrong way leaving him as a mirror image of us internally. His stomach is on the right and liver on the left, multiple spleens which they consider non-functioning, he has no transverse colon just an ascending and descending colon. We knew very early he had a severe heart defect.
He had one atrium and one valve. The vessels around the heart were backwards. The vessels inside his eyes are backwards and he has very unusual looking veins throughout his body.

 At 17 weeks gestation we found out about his heart defect and were encouraged to abort him. At 21 weeks an echo cardiogram was performed, I was told this is the last week I could legally abort him. At 27 weeks we were told he wouldn't survive the rest of the pregnancy. At 34 weeks we were told he wouldn't survive the delivery but they wouldn't do a c-section. Then we were told he wouldn't survive to long after birth.

Right after birth he was placed on the ventilator to assist him with his breathing, he had periods of apnea (stopped breathing). After about a week he was able to come off the ventilator but his was increasingly turning orange. He was very jaundice and the numbers were not coming down. At 21 days old we started to notice a change in the color of his pooh. After multiple tests, they took him to the O.R. to do an exploratory lap to look at his liver. They found his gallbladder was just a pocket filling up with all the bile from his liver and wasn't able to drain because it wasn't connected to anything. They, performed a Kasai Procedure, cut off the gallbladder attached part of his bowel to the liver so it could drain.

Three days after the Kasai, Boone coded, CPR had to be performed.  Six day post op and three days from the CPR, the night nurse noticed he had a rash on his belly. She made a life saving decision to draw a circle around it. Within 45 minutes the rash had outgrown its borders, she immediately called the surgeons in. Boone went back in to the O.R..

Due to the CPR part of his bowel died from lack of blood flow to it. Necrotizing bowel is life threatening, his gut was full of bowel contents. An ileostomy was made, he now poops in a bag which is only temporary. For several weeks following these events the Dr's tried to remove Boone from the ventilator. His heart has grown large and was taking over most of the left lung. This made it very hard for him to breath on his own. We stayed in the hospital for what I was told for him to grow. Grow until he is 4-6 months of age to perform the heart surgery. Boone wasn't gaining weight as rapidly as they would have liked, he was considered a failure to thrive baby.

After four failed extubations, the Doctors talked about putting in a trach, but I wanted to wait. Our cardiac surgeon became ill and was unable to perform Boone's heart surgery. The other cardiac surgeon wasn't comfortable doing his surgery. I appreciate his honesty. The doctors gave us two different hospitals to choose from. Children's Hospital in Omaha or Childrens hospital in Milwaukee. We didn't know much about Omaha but had heard nothing but great things about Milwaukee.
On Friday June 21, we were told we would be sent to Milwaukee in about 2 weeks. June 25, Jean the social worker came in and said Milwaukee wants Boone tomorrow therefore an ambulance will be taking him at 8am up to the children's hospital.
Boone had open heart surgery on Friday June 28 to repair heart. they separated the one atrium to make two. His mitral valve was so deformed they had to use a heart valve to repair his valve. Saturday was touch and go, they really weren't sure if  he was going to make it or not. He started to show them what a fighter he is.  He was removed from the ventilator 4 days post operatively. He began to gain weight.

Boone was discharged from Milwaukee and taken back to the University of Iowa for 10 days of IV antibiotics. Despite the odds, Boone was discharged from the hospital.

The problem is that the bills we now face are overwhelming. We are asking for help from our families, friends, and the community. If you feel moved, we would be most grateful for your donation to help.

Thanks from the bottom of our heart for the love and support you have shown our family. We are forever grateful.

With love and gratitude,

Jay and Lisa Begner