Jennifer Villamar had what she calls a “traumatic” pregnancy. Developing Hyperemesis Gravidarum, she suffered extreme, persistent nausea and vomiting that led to significant, life threatening weight loss. Jennifer spent over 13 weeks in the hospital trying to control her condition with a variety of medications. This condition was not only endangering her life, but the life of her unborn child. The treatments were successful, saving Jennifer’s life and allowing her pregnancy to go to full term. But Jennifer and her husband, Majid, worried about the effects that the medications she was given could have on her baby.
When little Macy was finally born, she was whisked away to the NICU as they discovered she suffered from pulmonary hypertension. Closely monitored her first week, Macy was ultimately given a clean bill of health and sent home with mom and dad to start their new life in Houston, Texas. Jennifer believed the worst was behind them.
Jennifer says the first year of Macy’s life was blissful. Macy was the happiest and calmest baby she had ever been around. She rarely ever cried. She slept wonderfully from the start. She was a great eater and was always full of smiles. The only concern Jennifer had was that Macy did not attempt to crawl like other babies her same age. When she asked the pediatrician about this, she was reassured that babies crawl at different stages and not to worry.
Jennifer had put her professional life “on hold” for Macy’s first year wanting to devote all her time to her daughter. However, Jennifer was in the midst of studying to be a doctor and needed to get back to her schooling. So after that first year, Jennifer re-enrolled in classes and after an extensive search, found the perfect daycare for Macy.
It was only a few days after starting her new day care that Macy became sick. She had an ear infection. Jennifer remembers one evening when Macy woke soon after being put down for the evening with terrible screaming. It was clear to Jennifer that Macy was in pain. She assumed the discomfort was due to her ear infection mixed with the fact that she was teething. Jennifer tried nursing her, holding her and giving her medication, but no matter what Jennifer tried, she couldn’t help Macy find relief. Every 20 – 30 minutes she would awaken with screams. This lasted nearly the entire night. Finally around 4 am, Macy fell into a deep sleep.
At 6:00 the next morning, Jennifer was not able to wake Macy when it was time to take her to daycare. She assumed the long, difficult night had just left Macy exhausted. Although she would not fully wake, Macy did nurse and Jennifer brought her to the daycare center for a few hours while she attended class. Afterward she picked Macy back up and the two of them settled into a nap at home. Jennifer was als0 exhausted as she had little sleep herself. She was shocked to awaken at 3 a.m. from this nap. Surprised that she had slept that long, she was suddenly terrified that Macy was also still asleep. She knew instantly that something was seriously wrong with her daughter.
The next morning they brought Macy straight to her pediatrician. The doctor was very concerned about her demeanor. Macy still would not fully wake, she was semi-comatose. They drew blood and Macy did not flinch. Her pediatrician believed there was something wrong with Macy’s eye. Her bloodwork was concerning as well and the family was sent directly to the ER at Texas Children’s Hospital for altered mental status.
They were met here by a team of doctors. She was fully examined and was given a CT. Jennifer says that not long after their arrival several police officers and social workers arrived. They directly addressed both she and her husband. By the line of questioning it was clear they were under suspicion of child abuse. For four hours they were questioned about what they were putting in their daughter’s milk and other direct accusations. Jennifer was terrified for her daughter and was at the same time trying to defend herself.
Finally the results from the CT were revealed. It was discovered that Macy had a very large tumor blocking all blood flow to her right eye and putting an extreme amount of pressure on her brain.. The pressure in her eye was well over the normal range, causing her to fall into a semi- comatose state. The police and social workers fully apologized for the interrogation and dropped the abuse case immediately. Macy was admitted to Texas Children’s under the care of Dr. Dan Gombos and Dr. Frank Lin.
Macy remained in a coma for the next six days. Over that time period, her eye swelled to the size of a golf ball. Having no blood flow, her eye slowly began to decompose. Dr. Gombos explained that Macy had a very rare and aggressive form of Retinoblastoma. She had no vision in her eye. The tumor was very large, Grade E and was 3 c.m. wide. Her condition was life threatening. The best course of treatment was to enucleate the eye.
Jennifer says that it all happened so suddenly. They hoped for a second option.
Once Macy came out of her coma and began to eat, she was healthy enough for them to take her to another doctor for a second option. They saw renowned ophthalmologist, Dr. Amy Schefler. at Memorial Hermann Hospital. Dr. Schefler agreed with the initial diagnosis and advised the family to return to Texas Children’s for enucleation.
A few days later, Macy had an emergency enucleation of her right eye.
Shockingly though, just days after surgery, Macy began to crawl! Very rapidly she started to hit some of the developmental milestones that she had missed. In the coming months she started Occupational, Speech and Physical therapy. Jennifer says that these therapies have been pivotal in her healing. Macy was also diagnosed with autism and began Applied Behavioral Analysis (ABA) therapy. This has helped her to navigate her sensory processing disorder and blossom. Jennifer believes it has taught her how to simply “be a kid”!
Macy is now thriving! She is five years old and attends kindergarten. Jennifer says she is the social butterfly of her class! Jennifer wants to share her story to remind parents to be aware of changes in their children’s behavior. In Macy’s case, she never presented the typical signs of RB. Macy did not exhibit the Glow. She did not have a lazy eye. She did not have eating or sleeping issues. She was not a fussy baby. Macy is one of ten children known in the world to have no symptoms at all until she fell asleep into a coma.
Jennifer hopes by sharing her story that other parents will react to the small signs that something is not right with their child and act. She knows just how lucky they are to have caught Macy’s cancer in time. For more information on Macy and her Retinoblastoma journey, please open this link:
At KTG, we are honored to share her story and can’t wait to see what the future has in store for this amazing young lady!
