Unique Family Genes
By Eva Viera
Family in the early years of my childhood was very non-traditional, dysfunctional, and yet I would not know it until I turned around 8 years old. What I did know was that having two wonderful older brothers made me into a “toughie” and a tomgirl (tomboy). I had to keep up with all the rivalries and games that two boys would challenge me with. At the same time I had responsibilities with a new born sister, or so I thought she was new born because of her size. Rosa was born in 1961, and she was such a good baby, it was rare that she would cry. She kinda whimpered a bit at times like a little kitten’s low key “meow” and none of us kids thought she was any different. She was born with a foot problem. Her little right foot was turned inward and had to be “broken” by hand and placed in a cast. That is what we were told as kids. Two years after Rosita was born; mom gave birth to a baby boy. He was named Raul and he looked so much like Rosita; same hair except with a very light complexion and he was very, very small. He too hardly ever cried. He was born with a cleft palate although, not noticeable from looking at him because his lips were perfectly shaped. His cleft palate opening was on the upper inside in the roof of his mouth. He couldn’t nurse from breastfeeding which was how mom raised us. We were all breastfed until 1year old. Raul lived a little less than a year and passed away in our house. I remember our family doctor and a hearse came to our house and took him away. I don’t remember attending a funeral service. My last memory of him was that. Not knowing then about WHS; I can’t help to think he might have been born with the same genetic disorder, born and died in 1963.
My life revolved around my sister. We shared beds. I would carry her outside to sit and watch us play. She smiled and laughed at us running around and being mischievous. I fed her with a spoon mashed table foods. She bathed when I bathed and as I lathered her up and rinsed her body and hair, there was lots of playing and laughter in the shower. I took care of most of her basic needs except change diapers. My mom took care of that. We had an everyday routine.
Oh, and there were night games when we were in bed, the blankie covers tent and singing to her and playing “touchie nose game”. You touch my nose and I touch your nose while I sang her to sleep. By the way, she still remembers the touchie nose game after all these years. At age six years she was having convulsions which after one year of medication they completely stopped. Might I also add, one year before I was born; a baby girl born with cleft lip and palate also passed away at 4 days old.
Rosa and I were separated for a few years after a lot of things that happened with our family. So, we will fast forward to my adulthood and being a mother to a beautiful five year old daughter. I was happy and pregnant with my second child at age 27, I had a couple of ultrasounds. One at the beginning of my pregnancy and a second towards the end of the ninth month, and I was never told there might be a problem with the growth of my unborn child. On my due date, I was scheduled a C-section because upon a vaginal checkup my child was found to be breech. The doctor tried to turn him to get him ready for birth; but ended up bursting my placenta. The C-section went well, and I was told I had given birth to a healthy baby boy as per the pediatrician in November of 1986.
Two days went by in the hospital before they brought my son Aldrick to me for the first time. The nurse said they had been feeding him formula with a dropper due to bottle nipples being too large and his mouth too small to be able to suck well or so they thought. Of course he couldn’t latch on to the nipple, he didn’t have strength to suck. I was not breastfeeding; it was not something I ever wanted to do. When I first saw my beautiful baby boy, my eyes teared up; the nurses left and they didn’t notice. My maternal “GUT INSTINCT” knew something was different. He looked perfect, tiny, cute, rosy pink, smelled like a baby. But, I knew. The pediatrician said, “It’s all in your imagination, he’s healthy!” His little face was identical to my sister.
Two weeks after taking him home he was losing weight and he was trying very hard to latch on to the bottle nipple and I was giving him most of his formula by 5cc syringe, not only every two hours but, constantly it seemed, because he wasn’t being satisfied. So I fed him a lot. He slept 5 minutes and wanted more, so I gave him more. He had this desperation in his appetite. He wouldn’t cry either, just antsy all the time with very little sleep in between. So, he had failure to thrive and was losing weight. I had the opportunity to fire two pediatricians along the way after one thought I was trying to starve my baby and had him admitted then called the child protective services. Which after a two week stay, I ended taking my son out of hospital “Against Medical Advice” until a NEW pediatrician gave us 24 calorie low-birth weight formula, which did wonders. At that time I couldn’t buy that formula, it was only given at the hospital under supervision for premature babies. So the pediatrician had a rep bring cases of the formula and he GIFTED us with it… koolest, baddest, greatest pedi EVER! At six months a two hour seizure, followed by many hospitalizations, month after month and week after week. The seizures were sometimes up to 24 per day. Sometimes now all I see is a blur. It’s been a tough road for a super strong willed child. Aldrick has been thru two car accidents with one resulting in a skull fracture and coma for four days in the intensive care in 1989, appendicitis in 2004 and sepsis from a rupture, to being “declared there is nothing else we can do for him”… MIRACLES DO HAPPEN. That’s all I know.
Today Rosa is living in a group home in San Antonio, Texas. She is a healthy and happy lady of 51 years. She will turn 52 in April of 2013, god willing. Rosa is 52 or 53 inches tall, and weighs 60 pounds. She is non-verbal. She feeds herself, does not chew but swallows textured table foods very well. She bathes herself, dresses herself, she is toilet trained. She loves to drink coffee in the mornings, crosses her legs while she sits and loves to leaf thru the latest magazines. Rosa never attended school as a child or had no therapies, in those days of the 60′s, schools did not accept “mentally retarded kids” as she was classified. So, she does not read of course, but understands everything, likes to help out and do chores around the group house. They call her “Mama Rosa” at the group home because she bosses everyone around to be proper in everything they do, like sit properly at the table or button your buttons all the way up, or lights need to be turned off if no one is in that room, beds need to be made. Oh, and it has to be done correctly. LOL, I visit her as much as I can and we sponsor a Christmas party at her group home for her and five other ladies with music, dancing, props, food and lots of fun. After all that’s the least I can do for my little sister. I cry every time I leave from there. I feel sad to leave her behind… all she has is ME. Rosa was undiagnosed until 1986 when Aldrick was born, her test was abnormality of 4th chromosome, but so was mine and Aldrick’s, nothing more was known at that time.
My Aldrick today is 26yrs old he will be turning 27 in November of this 2013. He is non-verbal, he points, gestures, and lets all of us know how he feels, his wants and needs. He wears diapers size 6 Huggies, size 6 in boys. He’s very tiny for his age group, only 48 inches tall and weighs 45 pounds. Aldrick totally depends on me for feedings which he does not chew and he eats by syringing mashed, pureed foods by mouth. He does not tolerate to eat with a spoon. He did when he was younger. He has oral aversion so most of the time it’s a battle to feed him but he loves to drink Ensure by sipee cup on his own. He depends on us for dressing although he can take his pants and shirts off if they are pull-up or elastic waist. He walks with poor balance and at times needs to be assisted by holding his hand especially on uneven surfaces or to climb staircases. He is transported by wheelchair for long distances, walks or travel. He tires easily and has an Atrial Septal defect, seizure disorder, endocrine disorder, and a pituitary disorder. He is a very happy, quiet kid who loves to play with toddler toys and music. He dances with his arms, and enjoys watching videos and live music bands. He travels with us everywhere we go on vacation and every day of the week. He loves to go bye-bye even just for a drive to nowhere in the car. LOL. Aldrick’s chromosomal tests in 1986 showed abnormality, but no diagnosis was given. My searches online self-diagnosed him with WHS by pictures of dead fetuses. In 2004, I had him confirmed with WHS thru FISH. We are a Unified and Unique family… Rosa, Aldrick and I (hubby included) till the end of time… I thank god I have the strength to care and provide for them. I am a RICH person. They both provide me with unconditional unspoken love, lots of blessings, and a sense of Godly humbleness and gentleness, that keeps me with faith and belief in my heart.