Adelina Marie De Leon

Adelina Marie De Leon passed away at 11:20 am on Saturday April 29th, 2023 at Baylor Scott and White in College Station, TX. She had fought for almost 10 months against a rare genetic disorder she was diagnosed with prior to birth.

Adelina was born on July 5, 2022 at 4:11 pm at Baylor Scott and White in Temple, TX. She weighed 5 lbs and 1.8 oz and was 17.52 inches long. Even though she was small for her age and underweight, her gorgeous long curly hair, big attentive eyes, and contagious smile outshined all of her anomalies.

After a month of being under phototherapy lights, endless body scans, and lab testing, she was transferred to Texas Children’s Hospital in Houston, TX for further diagnostic testing and with more specialists to look after her. During her stay in both NICU level 4 and 2, Adelina had gone through a surgery to fix the malrotation of her intestines. A g-tube was also placed to help with administering meds, feeding, and minimizing aspiration due to her cleft lip and palate. She also had gone through two liver biopsies to better understand why her bilirubin and other liver enzymes were high. A cardiologist also found a hole in her heart, but due to her tiny size, any surgery would have been high risk to fix.

After three long months at Texas Children’s, Adelina was finally discharged on October 26, 2022 with no definitive answer on her condition but was stable enough to go home. Doctors thought due to her condition, Adelina was going to develop at her own rate and time.

Once at home, Adelina started to thrive in her way and show good progress. Her meds, as well as the love of her parents, family, and friends, helped her to gain weight and be more active. Adelina loved to watch Ms. Rachel for hours during the day. As soon she started to hear Ms. Rachel sing, Adelina would get very happy and bring her hands together to clap. Despite not being able to sit up on her own, she would wiggle to the beat of the music.

Eventually, casting was placed to help fix her club feet. She spent 7 weeks in them before having her achilles tendon release surgery. Afterwards, she was placed in orthopedic shoes. With her new shoes on, she liked to move her legs around and reach for her feet. She was not a fan of grabbing objects; however, she would reach for faces if you held her or got close to her. Adelina was a very social butterfly (probably more than mom and dad). She really loved Facetiming her tia Aida. They could both talk for hours. Adelina was prescribed a helmet to fix her flat spots, but she never liked wearing it.

Even though she had long trips to her specialists’ appointments all over Houston and in Temple, Adelina would see and treat each day as a brand new day. She truly lived her life day by day making the most of it, always with a happy and cheerful attitude.

Adelina Marie is survived by her dad, Jesus De Leon, and her mom, Jessica Padron, along with all of her close and extended family. She will always be remembered as a joyful baby, despite going through what no baby should. Heaven gained their purest little angel back. We find comfort in knowing Adelina Marie will be waiting for us one day with open arms and her radiant smile.

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Adelina Marie De Leon falleció a las 11:20 de la mañana el Sábado 29 de Abril del 2023, en el hospital Baylor Scott and White en College Station, TX. Ella luchó por casi 10 meses contra una rara enfermedad genética, la cual fué diagnosticada antes de su nacimiento.

Adelina nació el 5 de Julio del 2022 a las 4:11 de la tarde en Baylor Scott and White en Temple, TX. Pesó 5 libras, 1.8 onzas y midió 17.52 pulgadas de largo. Aunque era pequeña para su edad y tenía un peso bajo, su hermoso pelo ondulado, sus ojos grandes y atentos y su sonrisa contagiosa sobrepasaban sus anomalías.

Después de estar un mes en tratamiento de fototerapia con luces, innumerables escaneos corporales y exámenes de laboratorio; ella fué transferida al hospital Texas Children en Houston, TX para realizarle exámenes adicionales de diagnostico y para que otros especialistas la trataran. Durante su estadía en la unidad de cuidados intensivos para niños niveles 2 y 4, Adelina fué sometida a una cirugía para arreglar el problema de rotación de sus intestinos. Un tubo gástrico fué introducido para administrar medicamentos, alimentos y minimizar la posible aspiración debida a su labio leporino y su paladar hendido. También le hicieron dos biopsias de hígado para establecer la causa de su elevado nivel de bilirrubina y otras enzimas. Un cardiólogo encontró un hueco en su corazón pero debido a que Adelina era tan pequeña cualquier cirugía era muy riesgosa.

Después de estar tres meses en el hospital Texas Children, Adelina fué dada de alta el 26 de October del 2022, sin una respuesta definitiva a su condición. Sin embargo su condición era estable y le permitía ir a casa. Los doctores determinaron que debido a su condición, Adelina iba a desarrollarse a su propio ritmo y tiempo. 

Una vez en casa, Adelina empezó a prosperar y mostró gran progreso. Las medicinas, el amor de sus padres, familiares y amigos ayudaron para que ganara peso y estuviera más activa.  Adelina amaba escuchar a la señorita Rachel cantar, se ponía feliz y aplaudía con las manos. A pesar de que no podía sentarse por si misma, ella se meneaba al ritmo de la música.

Eventualmente, un yeso fué puesto para ayudar con el problema de sus pies (Pie chapin o equinovaro). Ella tuvo que tener estos yesos por siete semanas antes de poder hacerle la cirugía para liberarle el tendón de Aquiles. Después de la cirugía, ella tuvo que usar zapatos ortopédicos. Al usar sus nuevos zapatos a Adelina le gustaba mover sus piernas y tocarse los pies. A ella no le interesaba alcanzar objetos, sin embargo le encantaba tocar los rostros de las personas cuando la alzaban o se le acercaban lo suficiente. Adelina era una niña muy sociable (probablemente más que sus padres). Le encantaba hacer 

FaceTime con la tía Aida, ellas podían hablar por horas! Adelina requería usar un casco para mejorar sus sitios planos en la cabeza, pero no le gustaba para nada usarlo.

A pesar de los largos viajes que tuvo que hacer para a ver a los especialistas por todo Houston y Temple, Adelina veía y trataba cada día como un nuevo día. En realidad, ella vivió su vida día a día haciendo lo mejor de ella, siempre con una actitud de felicidad y alegría.