Meet Kayla

On November 19, 2009 my husband Larry and I went into the ultrasound room so happy and waiting to find out the sex of our second child. Before too long we knew things weren't right and what we would find out over the next four days would crush us. We were sent over to Childrens Hospital Boston Advanced Fetal Care unit and soon became aware of what was wrong. Our baby girl had a rare severe anomaly of the heart called Ebsteins Anomaly. Part of her brain hadn't developed and she had a large cleft lip and cleft palate. It did not look good and we were given the option to abort. We are pro life and we made sure that the Doctors knew where we stood on the matter. "The Baby" now had a name and we wanted everyone to know that she was a real person. We asked everyone to call her "Kayla".

The more tests we did while Kayla was in utero the worse things looked. We had to except that we would only get to meet her in heaven so we planned out her funeral and I waited for the day when I no longer felt her move and kick. We went back in to CHB at 34 wks of gestation and a miracle had happened! Kayla's heart was showing signs that it could possibly function after birth and a small part of the brain had developed well after it should have. We were going to meet our little miracle. "He performs wonders that cannot be fathomed, miracles that cannot be counted" Job 5:9

On April 12, 2010 Kayla Ann Wiggin had made her arrival in this world and was doing ok. She was brought over to the Cardiac Intensive Care Unit at Children's Hospital Boston shortly after birth. After day 5 her breathing tube came out and we were able to hold our sweet baby girl! I cried such happy tears and will never forget that moment. In the months ahead there were some good days and then some really bad days and she almost left us one to many times but she kept fighting. Kayla underwent numerous surgeries, procedures and cardiac caths while inpatient. In June she went to the OR for a Gtube and Nissen. A tracheostomy was done in July and finally on August 27, 2010 she had her first open heart surgery. She did really well afterwards and it didn't take long for all of us to realized that this is what she needed all along. Now that her heart was healing she was able to get the first stage of her clefts repaired. While inpatient we learned that Kayla was genetically confirmed to have CHARGE syndrome. It was sad to hear our baby had a syndrome but yet a relief to know how all these issues were connected. It didn't change her plan of care but it helped sum up everything she had and would help us with her medical and educational needs in the future.

Kayla was discharged from the CICU on December 10, 2010 and we were so excited to have her home. She was still in need of 24/7 care but not sick enough to stay in the ICU. So we ran one at home. It was not easy and the first trip back was a 911 call Christmas morning but our stays became less often and for less admission time. We were able to celebrate her first birthday at home and she had her first elective surgery to do a complete repair of her lip and nose. Kayla received Early Intervention which over time did amazing things for her. Now that she was healthier, she was thriving at home! We taught her American Sign Language as her hearing was impaired and she soon learned to walk with a postier walker. July, 2012 she was able to get her trach removed and started eating and drinking by mouth. We had a rough start to 2013 as she had a blockage in one of her valves that was repaired in a difficult cath. But that didn't slow Kayla down. She started to go to the public school with her nurse and learned to walk without her walker. Her hearing miraculously has improved, though still impaired. Kayla recently passed her swallow study for thin liquids which has opened up opportunities to wean her off her Gtube sometime in the nearer future. We could not be more proud of our little miracle!

Kayla turned 4 this April and I look forward to the many more milestones she will reach, the smiles she will give and the joy she will spread to others. There is something very special about her and we are so blessed God choose us as her parents. "O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago." Isaiah 25:1