Tiffany Reann Wolven is a 22-month-old happy, smiling baby whose very existence is a medical miracle.
Tiffany was born premature at Texas Children's Hospital in Houston on Nov. 27, 2010 weighing 4 pounds 7 ounces. She spent four months in the NICU at Texas Children's Hospital, her mother Tammy Wolven said.
She was born with a protrusion at the base of her skull measuring 4 inches by 2 inches, which caused part of her skull not to close, allowing for a portion of her brain and spinal fluid to protrude through the hole, forming a skin-covered cyst on the back of her head.
The newborn had many other problems including Arnold Chari III malformations, which affects the cerebellum in the infant's brain and affects balance; Meckle Grubber Syndrome which is a rare, fatal, genetic disease that causes cysts to form on the kidneys and lungs; Cerebral ventriculomegaly, which is an enlargement of the lateral brain ventricles; tethered cord, which causes tissue to form on the spinal cord, limiting movement, an elongated spine, and a small hole in her heart where the third ventricle did not form properly. She also has a severe acid reflux disorder, which causes seizures.
The nearly 2-year-old has had seven surgeries, including two brain and five stomach surgeries, since birth.She had her first brain surgery to remove the protrusion at the base of her skull at 10 weeks old. In August a procedure was done to help alleviate pressure in her brain.
“Tiffany has to be on oxygen and pulse ox monitor because of seizures, and she is dependent on a feeding pump for all her meals,” her mother Tammy said. “She cannot take anything by mouth because of the choking and retching. She cannot walk, crawl or talk. She requires a medical stander and AFO braces on her legs to help strengthen her legs to be able to learn to walk. She is developmentally delayed being premature, and having the problem with her brain.”
Tammy said at 22 months, her daughter functions as a one-year-old.
“Through all the hospitalizations and surgeries, she has remained a happy little girl,” Tammy said. “We are looking forward to the day she can go on to be a normal little girl. We have to be so careful with what we do with her, and where we take her.”
Baby Tiffany is facing more surgeries on her back and eyes after the first of the year, and her medical condition is listed as “day to day,” meaning she could succumb to complications at any time.
“We take every little improvement in her condition with great happiness but know that every ounce of progress can be taken away just as quickly,” she said. “At times the only thing that keeps us going is that sweet smile and little laugh.
Tammy said Tiffany's struggle started early in life, at 16 weeks gestation, when doctors discovered her skull abnormality. Tammy said she and her husband Mike were sent from the OB/GYN to a perinatologist and a specialist.
“He told us the baby was terminal, and she would be toxic to me,” Tammy said. “We were told basically to terminate the pregnancy.”
The couple was referred to another doctor to perform a procedure to terminate the pregnancy but the doctor refused because of the risk to Tammy's health. Tammy said she was dropped as a patient by her doctor and was referred to a doctor at Texas Children's Hospital in Houston for a fetal MRI.
The couple was traveling to Houston three times a week, when another problem arose in her pregnancy.
“The baby was not gaining weight so I was told to eat more,” Tammy said. “I was only 115 pounds when I got pregnant, but when I delivered I was over 200 pounds. I was being forced to eat. I would eat so much I would get sick then be made to eat again. We were told by the doctor that if the baby didn't get to near 5 pounds she might not make it.”
Tammy said she came into the pregnancy with a bad back that needed surgery and the weight gain only exasperated the problem.
Since the birth of her daughter, Tammy said she has had 13 surgeries, on her back, hips, feet, gallbladder and a hysterectomy.
In the beginning, her husband Mike did not know if his wife or daughter was going to make it through the birth.
“My husband has a very courageous and loving heart spending time between my room in labor and delivery, ICU and the NICU, not knowing if either one of us was going to make it,” she said. “I can only imagine the stress and emotional strain of being put in a situation like that.”
Tammy said she is now disabled and the couple travels to Houston several times a month for doctor appointments.
Mike, who works at the Texas Department of Criminal Justice in Rusk, received a separated shoulder and broken hand in an altercation between inmates, causing him to have to take additional days off.
“When I had to stop working our family income was cut in half, and when my husband had to take off work without pay it just made things even more complicated,” Tammy said. “We arrived home from Houston in August to find a letter on our door saying we were to leave our residence.”
The couple is working to relocate to Flint.
The family said the road has been long and exhausting but the miracle of Tiffany keeps them going.
“Tiffany is a miracle, and she makes each and every day a true blessing,” Tammy said. “She inspires us to be the best we can be because we see her beating the odds each and every day, She never looses her sweet smile or loving heart no matter how bad she feels.”
It has also been a lesson in perseverance.
“Fighting for her has taught me to never give up no matter what life throws at you,” she said. “If you keep fighting for what is right, you will be blessed.”
An account has been set up under the name Tiffany Wolven at Austin Bank for anyone wishing to make a donation to the the family help with her care and the family's travel expenses.
* Factual information about Tiffany’s medical conditions in this article was taken from the National Institute of Neurological Disorders and Stroke and healthline.com
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