WILL KOHN

How did you first become involved with UI Children's Hospital?

We became involved with UI Children’s Hospital when Will was diagnosed at 22 months in-utero with HLHS. (Hypoplastic Left Heart Syndrome) Since diagnosis Will has had 3 open heart surgeries at UI and is currently on the heart transplant list.

How was your exprience at UI Children's Hospital?

Our experience at UI has been phenomenal. WIll spent 3.5 months of his first 8 hospitalized between the PICU and 2JCP. Along with the 3 open heart surgeries he has also had multiple heart caths. Through all of that the level of care and compassion we have received from UI has been great. We have never been treated as a “number” and are always recognized by many doctors and nurses that we are not even currently involved with.

What would you tell other parents about UI Children's Hospital?

The number one thing i would tell every parent that asked about UI is to not hesitate to take their child there.

Will's Full Story

After 7 years of trying to have a child and many rounds of fertility trials and drugs Meghan was able to get pregnant without any of those things.  Everything was going great up until the 20 weeks ultrasound when we were told that they wanted to send us to a pediatric heart specialist to determine if the abnormality they possibly saw was anything.

At 22 weeks an ultrasound told the doctors that Will was going to be born with a rare congenital heart defect called Hypoplastic Left Heart Syndrome.  In normal terms, he was going to be born without a left ventricle.  There are some words in life that you never forget and those were some followed by the doctor stating “he will never be captain of the football team, but still could be class valedictorian”.  That meant a lot when it was being said to a long time high school football coach and wife.

Will was born at University of Iowa Children’s Hospital on November 12th of 2010.  We got to hold him for a bit before he was taken back to the NICU to be given all the correct medications to allow him to survive until his first open heart surgery.  Will had his first surgery at 6 days of age.  He got through that with very few complications and we were home in about 3.5 weeks.

Meghan quit her job so that she could stay home with Will and keep him healthy and out of daycare.  This worked pretty well because we did not end up back in the hospital for another 4 months with complications from the CHD.  Will ended up having his second open heart surgery at 4 months and then a third at 8 months.  In between he also had surgery for g-tube placement and many heart caths for stent placement and routine checks.

In the fall of 2013 Will had a pre-Fontan heart cath to make sure we were free and clear for what should have been his last heart surgery preparing him for “normal” life.  During this cath it was determined that his heart was most likely too weak for another open heart surgery and it was recommended that he be placed in the heart transplant list.  Of course this was news that no one was expecting to hear.

After we were told this news we decided to have a second opinion at CS Mott Children’s Hospital in Ann Arbor, Michigan.  At first they thought that they may be able to allow him to have the Fontan but after a second visit it was determined that listing Will was the best option.

After hearing that, we went back to the University of Iowa Children’s Hospital and Will was officially placed on the heart transplant list in July of 2014.  Since then he spends time playing at home with Legos and his dog Otto.  We are hoping that he gets the heart soon and can start up school in the fall.  If not, we will deal with the cards we are dealt just hoping that heart comes soon.

Will is a tough, stubborn, intelligent and brutally honest little 5 year old.  He looks pretty good for everything that has happened to him in his short lifetime.  The doctors always make it sound like he is defying the odds by staying out of the hospital all this time as he waits for the heart.  We just think these heart kids are tougher than most.

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