Meet Lia.

 

When Lia was diagnosed with Trisomy 18, a rare life limiting disease, her family turned to Coastal Kids Home Care.

 

 

“I miss her...she would just stare at me, she knew who I was, and that I loved her.”

Baby Lia was born in July 2020 with an extremely rare condition called Trisomy 18. With fewer than 20,000 cases a year, only about 12% of babies with Trisomy 18 survive the first year of life. Soon after Lia was born, she was placed on the Palliative Care Program at Coastal Kids Home Care.

At Coastal Kids Home Care, we are honored to provide palliative and end-of-life care to children like Lia. As Lia’s family faced the difficult prospect of losing their child, our team of providers offered unwavering support. Pediatric Nurses helped ease Lia’s transition from hospital to home by offering her parents education, assistance with medication treatments, and careful monitoring of Lia’s pain and symptoms. Counselors were available to answer questions from mom and dad and Medical Social Workers assisted the family with practical and financial issues around care and planning. After almost a year on the Palliative Care program, baby Lia passed away this past Mother’s Day.

“I am extremely grateful for Coastal Kids Home Care,” says Lia’s mom, Monica. “I didn't know how to care for a child with [Lia’s] condition, CKHC educated me and were there to guide me. I had so many questions and the team was patient with me and supported me. I want to say thank you for all the help that Coastal Kids Home care has done for me and my family.”

Today, Lia’s family is preparing to honor their baby girl Lia through the Dia de los Angelitos Celebration. Although Lia’s family admits they have never participated in Dia de los Angelitos, they have known of this day because of friends and family who celebrated the day to honor their own little angels. A lot of care goes into Día de los Angelitos. Despite the pain one must endure following the death of a child, this celebration is vivid and colorful. Rather than mourn newly dead children, grieving parents instead try to be happy. Because although they have lost a child, they have gained an angel.

“This year we will be putting up our own little altar for Lia, our little angel, in our home,” says Monica. “We will put out the milk she used to drink, the gerbers she used to like, water, and some flowers. We also plan on praying for her on this day.”

This holiday, we remember Lia and all the other Coastal Kids kiddos who have gone all too soon.

“I am extremely grateful for Coastal Kids Home Care.  I didn't know how to care for a child with [Lia’s] condition, CKHC educated me and were there to guide me. I had so many questions and the team was patient with me and supported me. I want to say thank you for all the help that Coastal Kids Home care has done for me and my family.”

--Lia's Mom

 

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