Saving Lilly

Allow me to introduce my beautiful niece, Lillian Bay Beatty. My Lilly. When I heard I was going to be an uncle, I was nearly in tears. I was so happy for my sister in law, her husband, and our entire family.

I began counting down the days until Lilly would enter this world, surrounded by love and high hopes. November, 2009 would be a momentous month in our family history.


Then we received news of a health complication. Still in the womb, a cystic hygroma was detected on her neck. The following is the story of Lilly and her fight for life. (A big thank you to the Boca Beacon, the Marcy Shortuse for the original article)


Lillian Bay Beatty sits in the back seat of her parents’ car like every other infant, with eyes wide open and wondering as her tiny glimpse of sky through the back window passes by.

Like many other mothers, Nikki Beatty sits and watches Lilly, sometimes fretting with her coverings or her straps, watching over her every move.

Six words sum up Nikki’s life right now.

“One mistake, and she won’t breathe.”

Nikki worked as an advertising representative at the Boca Beacon until recently, when she left to take care of her daughter. Her husband, Brad, is the island’s UPS man. They both realize they are the parents of a living miracle, a baby who has beaten the odds several times.

Lillian has been diagnosed with a cystic hygroma, which is a mass that is growing inside and around her throat and mouth. Its presence was discovered during a routine check-up at Nikki’s obstetrician when she was approaching her third trimester of pregnancy. Cystic hygromas occur in approximately 1% of fetuses between weeks 9 and 16 of pregnancy.

The mass has steadily grown since then, leaving Nikki and Brad clinging to the hope that their otherwise healthy baby girl will be able to survive the very difficult road of surgeries that lies before her.

In one split second, the couple’s joy changed to uncertainty in the doctor’s office that day.

“When my OB doctor saw the mass on her neck, he sent us to a specialist right away,” Nikki said. “We ended up going to three different specialists after that, and no one could really tell us what it was until she was born. All we knew was that it was blocking her airway.”

While Lilly was born a healthy 7 pounds, 15 ounces at All Children’s Hospital in St. Petersburg on November 11, 2009, her emergence into the world set the tone for the trials she was to go through.

“We went in for surgery early that morning, and they put me under general anesthesia,” Nikki explained. “The reason for that was because they were doing what is called an ‘exit procedure,’ which means they take the baby halfway out so she’s still connected to her oxygen supply, then they were to intubate her before cutting the cord.

“But that’s not what happened.”

As they pulled Lilly from Nikki’s stomach, they found out too late that the umbilical cord was much shorter than normal. It ruptured, leaving both mother and child bleeding out. Things quickly became chaotic.

“We were both immediately clamped off, then they had to take Lilly out and immediately put her on a table where they could intubate her,” Nikki said. “Both of us lost a lot of blood. Lilly had to have blood transfusions a little bit later on, not only from losing blood during the surgery but from all the blood work they had to do on her.”

But Lilly is a trooper. She has proved it from the time she was born, and all the times since then that she has come close to death.

After spending the first two months of her life at All-Children’s, Lilly seemed to be constantly improving. The breathing tube was even taken out at one point for about two weeks, until a procedure called a bronchoscopy (where a camera is put down Lilly’s throat) showed the mass was progressing.

“They thought she was having more problems breathing, and her oxygen saturation levels in her blood were low,” Nikki said. “We didn’t know it until that test, but she had pneumonia. She had been sedated when they did it, and because of her sickness she didn’t wake up. She was out for about a week, during which time her lung collapsed and they had to put her on a ventilator for four weeks.”

Just before Christmas Lilly had a second bronchoscopy, and doctors determined it was time for the tiny baby to have a tracheotomy, which is a small incision at the base of the throat to insert an oxygen tube. Because she couldn’t eat like other babies, from the bottle or breast, doctors also inserted a tube in her stomach for feeding.

“They had to paralyze her for four days so she didn’t move and make the trach pop out,” Nikki said. “Then, around January, they started to wean her off the ventilator. The whole time she had an IV in her arm, which ran to her heart, so they didn’t have to keep poking her. That got infected and she got a blood infection.”

That required a secondary IV to be placed in Lilly’s head, because all of the veins in her hands and feet had already collapsed.

It also meant shaving half of her hair.

Sometimes in the face of such adversity it’s the little things that seem to stand out. Nikki remembered the incongruity of seeing her child with her head half-shaven, while the nurses worked to trim the other side to make it nice and neat.

She also remembers January 9, a day when it snowed in St. Petersburg. Lilly and numerous other children were transported through an underground tunnel to a new facility the hospital opened.

Three days later, Lilly was discharged.

Three days after that, Lilly stopped breathing.

Working frantically to save her child, Nikki called 911 while doing an emergency trach change, while at the same time “bagging her,” using an ambu bag that forces air into the baby’s lungs.

She found herself back at All-Children’s for a week, and then returned home.

A week later, she started vomiting after aspirating her own saliva and had to go to St. Pete again.

“When we came home from the hospital that time, we had to go right back up for an MRI to check on the neck mass,” Nikki said. “They thought it had grown even more, and they found she wasn’t able to swallow.”

Another MRI was done recently, and doctors have determined that Lilly will need surgery sooner than later. When she was diagnosed, the doctors said she would have to be a year old and 20 pounds to safely go through anesthesia again. That time frame has now narrowed, and surgery may have to come as soon as March or April.

The mass, which is actually a series of ever-growing, smaller cysts combined, has now grown to wrap around the veins and facial nerves in Lilly’s face. It’s taking over, so much so that blood vessels on the baby’s chin are popping from the strain. The mass is trying to take over the vascular pathways that keep her alive.

Lilly’s eyes, ever alert, already hold wisdom that comes with knowing the difference between feeling bad and feeling good. The sturdy little soul smiles, she plays, she loves to see the world around her. One difference between Lilly and other babies is not immediately recognizable, but once it becomes known it is startling.

Lilly can’t make any noise. No baby babble, no giggles, no lusty cries of impatience when she’s hungry or needs changed.

More importantly, it means Lilly can’t make any sound when something is wrong.

While it is obvious that Nikki would love nothing more than to hear her daughter’s voice, she is much more concerned with the fact that Lilly could be in distress and wouldn’t be able to let her know. That is what keeps the diligent mother at her baby’s bedside almost 24 hours a day.

“The trach is below her vocal cords, so she can make a gurgling noise but no baby noises,” Nikki explained. “The cyst has now moved through the bottom of her mouth and it’s in her tongue now, which also pushes up the saliva and everything else. We have to constantly suction her mouth so she doesn’t aspirate it, because then she could get pneumonia again.”

Nikki and Brad have had to be extensively trained to handle the many complicated situations that arise with Lilly’s medical equipment.

“I went through eight hours of training every day for a month up at the hospital,” she said. “We have to take care of her feeding tube, to keep it clean and make sure it’s not irritated because it always gets tugged on. Once a week we have to completely change the trach out, which means we have to bundle her arms down, take the old one out completely, check the stoma (the trach hole), then put in another one. We have to suction her mouth three or four times an hour all day and night, sometimes more. She has several complications from having the trach, which cause a lot of secretions to build up and we have to be there, day or night, to suction it. We have to keep her neck very clean, and watch to make sure the skin doesn’t start to break down.”

All of this requires a lot of equipment, so Lilly travels with a lot of luggage. A portable suction machine, complete with its own compressor, must always be on-hand. An apnea monitor is also mandatory, but Nikki said if she has her eyes on the baby all the time she doesn’t have to use it. The couple carry a “go” bag, which includes a second trach set, as well as one a size smaller in the event the larger one becomes blocked. They carry their AMBU bag, they carry a mist collar to keep Lilly’s throat and airways moist … but to Nikki, it’s all worth it to be able to take Lilly into the outside world.

“We can’t just keep her at home,” she said. “She loves to be out, to look around, to see the world. It’s a lot of stuff to carry, but she needs to experience things like other babies get to. And, of course, we always have to go to all the doctor appointments.”

Always a fighter, Lilly has beaten the odds many times. With her first major surgery looming on the horizon, she may be facing her biggest obstacle yet.

Nikki said that it’s very hard to determine what Lilly’s odds are in facing this type of surgery so soon in life.

“They don’t have a lot of information to go by,” she said. “Most children who have this don’t even make it through the pregnancy. The percentages of babies who made it through to the second trimester were only five to nine percent, and half of them had chromosome disorders. Lilly does not have chromosome disorders, and she’s done really well so far. But there’s no guarantee after the surgery that the cysts won’t grow back. There is no cure.

“The only person I could find around my age that had survived this for that long has had 24 surgeries. She’s 23.”

Nikki and Brad have done what they have to do to make ends meet. When they met, they each owned a home and have since sold one to lower their bills. Their insurance pays an 80/20 split, which sounds good on paper.

Unfortunately 20 percent of hundreds of thousands of dollars in bills adds up.

Nursing care is sporadic, at best, and Nikki finds herself next to Lilly’s crib throughout most of the day and night.

“We do have nurses who can come and help me, but it’s inconsistent as to when they show up,” she said. “My mom helps out as much as she can, too.”

Meanwhile, a very tired Nikki and a very worried Brad watch over a bright-eyed, beautiful Lilly Bay. She watches movies on the computer with her dad at night and plays, while numerous cords run throughout the living room. They all lead to the tiny baby that they are keeping alive, and the couple has come to look at them commonplace.

As while Brad stays with Lilly in the evenings, Nikki tries to catch up on precious sleep and finds time to maintain the house. When Brad goes to work, she settles in next to Lilly’s crib to watch her child’s every movement, to monitor her breathing machine and her trach, and to feel blessed in the fact that Lillian Bay is a fighter. A tiny fighter that will hopefully sail through the trials to come in her future with the same tenacity she has shown since. (end of the original article)

From the uncle - I have yet hold my baby niece, my Lilly. I will be flying to Florida in June, and this is all I can think about. Holding her and spoiling her. I want to be able to give her hugs and love throughout her entire life, for many years to come. Please help make this possible, for myself and the rest of her family. I have set up a donation fund linked to a bank account dedicated to Lilly's health care. Anything you can give will be a help to Nikki, Brad, and most importantly Lilly.

She needs our love, our prayers, and our support. Please, help us save Lilly.