Kaitlynn, born 2003Our daughter, Kaitlynn, was born in a small rural hospital with a diagnosis of Hypoplastic Left Heart Syndrome, Asplenia, Heterotaxy, and malrotation of the intestines. The doctors explained to us the severity of the surgeries and my first thought was that I did not want her to have to suffer through all that. Then, I realized that was not my call and my prayer since that moment was "God let your will be done in her life, please protect her from pain and suffering". He has done just that and we know that we (like many other parents)were specifically chosen for the job of caring for one of his special, spiritual ones whom He had a special plan for.
Kaitlynn is quick to correct me if I mention she is my granddaughter who became our daughter at age 11 months. My husband and I are Mama and Daddy, even though her parents live nearby. I am thankful God made it possible for us to retire and care for her.
The pregnancy and delivery was normal and the doctors thought we had a perfect child until she was 24 hours old and she "crashed". To summarize her story, she was flown to a larger hospital 7 hours away where she remained for about 4 months before ever coming home. At 9 days old, she had the modified Norwood surgery (13 hours); at 2 months old she had the malrotation surgery; at 6 months old she had the modified Glenn; the Fontan at age 1 yr 10 months; age 2 years 6 months pacemaker; age 3 years and 7 months fenestration closed. The doctors told us to bring Kaitlynn home and enjoy her because we don't know how long we will have her. We've tried to make as many of her dreams come true as possible.
In between surgeries, during surgeries and recoveries, there has been many prayerful decisions, numerous complications and numerous smaller surgeries and treatments not mentioned. Thankfully, before Kaitlynn's birth and during Kaitlynn's lifetime, much progress has been made in the treatment and surgeries available for her conditions, but we have been told Kaitlynn will eventually need a heart transplant if she is a candidate, we could lose her at any time , and the pacemaker will be replaced as needed.
Kaitlynn has done great since her age of 3 years, 7 months. She is a beautiful, happy very spiritual young lady. I must admit she is spoiled rotten by everyone who knows her and even don't know her but come in contact with her, even without knowing her story. Her activities are limited but she participates in everything allowed. She has won several beauty pageants, does ballet and jazz dancing, acts and sings in church and community plays, and has a card ministry for those in need. Her main complaint is having to avoid crowds, shopping in stores, etc. and for the first 3 years she was home bound due to such. At the doctor's suggestion (because she has no spleen), she is home schooled, but she loves it and is a straight A student. To see Kaitlynn, one would judge she is in perfect health; but we know better.
Due to her looking healthy, even people who know her condition think she "has been fixed" and it is a challenge and a constant supervision when Kaitlynn participates in outside the home activities to make sure too much is not expected of her without it affecting her physically.
My advice to all parents of special children: depend on , pray, and thank God for the opportunity; love and live each day like it was the last; be educated about your child's condition and the care needed. The care your child receives from you as a parent plays a major part in your child's life and health.
Story by Kaitlynn's grandmother (now mom), Patsy - LOUISIANA