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Maya – a bright, spunky and very affectionate 21-month-old from Denver – is a survivor and an already seasoned fighter. She is a twin who doctors didn’t expect to live, a twin-to-twin transfusion syndrome (TTTS) donor survivor (like her sister), an ex-31 week preemie and congenital heart defect heart warrior. Maya is mighty in so many ways and has fought and proven how tough she is time and time again.
I found out I was pregnant with twins at my 12-week ultrasound. But shock and happiness quickly turned to fear: There was something wrong with the babies. The twins measured differently, and the doctor would not give us an approximate due date, basically telling us to be prepared to lose the babies. While we were devastated, some hope remained. At a follow-up ultrasound, the doctor determined that, while the babies were different in size, it was possible they were fraternal. Most likely, the doctor explained, the babies were a few days apart, which explained their size difference. We were told they should develop and grow just fine.
Then, at the 18-week anatomy scan, we found that the babies were in fact identical twin girls, which signaled a serious danger. They were diagnosed with advanced stage twin-to-twin transfusion syndrome (or TTTS). Maya, the so-called “donor twin,” was losing all of her blood and nutrients to her recipient sister, Maleia. Maya had barely any fluid around her and was nearly shrink-wrapped in her own sac. Meanwhile, Maleia had an excess of fluid and was essentially drowning, her little heart thickened and in danger of being too overworked with the extra fluid.
We were offered several options, including terminating one or both pregnancies. It was a choice that was never once considered. The only way to try to save their lives was to surgically sever the shared blood vessels in the placenta and equalize the fluids.
We had surgery at the Colorado Fetal Care Center just two days after the diagnosis, with Dr. Timothy Crombleholme performing the surgery. Over 20 blood vessels were laser ablated and more than 2.5 liters of fluid was removed from Maleia's sac, with fluid finally able to reach Maya. We were incredibly lucky that the delicate surgery was successful, but since Maya only had 10% share of the placenta, she would continue to be very restricted in her growth.
Once Maya had fluid and was no longer "stuck," doctors could finally see her heart. After a very long uncomfortable fetal echo, our doctor gave us the news: She had tetralogy of fallot, a congenital heart defect that meant her heart was formed with four defects: She had a very large hole, pulmonary stenosis, overriding aorta and thickened right ventricle. Risk of death would be high. On top of everything we and the babies had been through, we now had to face this shock. We again were given the choice to terminate. Just as before, this was not a consideration.
At 20 weeks pregnant, I was put on bed rest and strict monitoring. I tried my best not to worry and let the babies grow. But at just over 29 weeks the sac around Maleia ruptured. I was admitted to my primary hospital until the babies came. A C-section was planned since Maya might not survive a vaginal birth due to her heart condition and the stress.
At 31 weeks and one day, I went into labor. Maleia was born at 3 pounds, 13 ounces, and 16½ inches. Maya was 2 pounds, 3 ounces and measured 14½ inches. Maya was born blue and not breathing, but with help was finally able to breathe on her own.
Being preemie and two months early, the girls were immediately taken to the NICU, both requiring oxygen support and unable to eat on their own. But each day, they slowly began to grow. I was relieved that they were alive and being well taken care of. Maleia was in the NICU for 44 days. Before discharge testing showed Maleia’s heart was normal and healthy, and the side effects from the TTTS were gone. After she came home, she went with me every day to see Maya, who had started having many complications, including heart failure. On her 63rd day of life Maya was transferred to the Cardiac Intensive Care Unit (CICU) at Children’s Hospital Colorado.
On June 28, 2013, at only two and half months old, our little girl underwent open heart surgery. The hole in her heart was closed and the right ventricle scraped to remove excess muscle, but her pulmonary valve was in such bad shape that it was removed. The first 48 hours were terrifying, with blood pressure spikes, seeing her in pain and wondering if she’d survive. Surprisingly, her recovery went far smoother and faster than the doctors expected. Soon she was breathing well and only needed a small amount of oxygen. She was awake, alert and happy.
Today, Maya is doing great. She is walking and talking. She is loud and energetic, and incredibly sweet. She is meeting her milestones and is right on track. Recently Maya was able to get rid of nighttime oxygen. She still has a G-tube and struggles some with eating and consistently gaining weight, but has come a very long way. Maleia has had virtually no medical problems and is thriving. She is bright, happy and loves her twin sister, Maya.
The next few years will be tough. Maya may likely need another open heart surgery – but once again, our little girl will prove how mighty she really is.