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Lila's Story
This story was submitted by Lila's mother, Amy Brown.

Meet our daughter Lila Lynn Hickman, born on July 1st, 2009. Lila was born with Complex Congenital Heart Disease (Interrupted Aortic Arch, Large VDS, Large Pulmonary Artery, Twisted Pulmonary Artery and also a small ascending Aorta). Lila also has DiGeorge Syndrome (22QII) and a Soft Cleft Palate. Lila is a very tough and sweet girl. For the first four months of Lila’s life she lived at the University of Minnesota. Besides being born with heart disease and DiGeorge Syndrome, Lila was also born with an infection in her stomach called Necrotizing Enterocolitis. This made her very ill and led to surgery not long after she was born. During this surgery, the general surgeons had to place a Double Barrel Colostomy Bag so that her little tummy could heal. Eventually, after a couple months the doctors were able to remove the colostomy bag and reconnect Lila’s intestines. During this time, Lila was receiving her nutrition through a NG and NJ tube.

Due to Lila’s heart being weak and also having the Palate problem, we had to come up with a more efficient way for Lila to get her feedings for when she came home. The decision that we ended up making was to put a G-Tube into her tummy. This is a great way for us to give her her feedings and medications.

Also, during the first four months of Lila’s stay we had to address the Interrupted Aortic Arch issue. Up until this point Lila had been on medication to keep her ductus open, but this medication is not healthy to be on for a long period of time. We had a very long conversation with the Heart Surgeon on what the best thing to do for Lila and at this time he didn’t feel Lila was healthy enough to fix her whole heart so we all decided that the best thing to do was to buy Lila some time and let her grow. To allow this to happen the doctors place a stent in between the duct and the interruption to keep the blow flowing correctly. This stent would be removed at a later date.

So now Lila was healthy enough to come home. We needed to prepare so I took a few required classes and we finally brought her home on October 23rd, 2009. This was a wonderful day. The next six months were very difficult and challenging. Lila was constantly in and out of the clinic and hospital. This was due to breathing difficulties and infections. But we made it through and the big heart surgery day finally came on May 19th, 2010. Little Miss Lila was finally healthy enough to have her arch fixed. After 9 long hours of surgery the surgeon finally came out and told us our sweet baby girl was in recovery.

In the weeks to follow, Lila was in the PICU and doing well, there were a few bumps in the road but Lila never likes to make things easy. But our little star made it through, and one month after her big surgery she was home. She will still need more surgeries in the future but for now we are enjoying all of the good times at home. We are loving watching Lila learn and grow. She has started eating on her own by mouth. This is a slow process but is better than nothing. Lila is rolling everywhere. Lila also receives PT, OT and Speech therapies several times per week. We are working on crawling and talking.

This summer we celebrated Lila’s first birthday and she enjoyed her very own cake. Christmas was another special time even though Lila wasn’t able to open gifts, but her big sister, Laney, didn’t have a problem helping her with this. Lila’s favorite time is bath time and splashing is the main event. Lila also loves to go on the four wheeler and skidloader with her daddy. She says “Momma” all of the time and loves to be held and kisses everything, she is so cute. Lila is a true joy and blessing to our family. She is always making us smile. She is the sweetest little girl and amazing. We love her very much and enjoy every day we have with her. Thanks to everyone at CentraCare for helping us keep our Sweet Lila Bear healthy.