Check out this great story on Stephen and his friends!   http://www.leavenworthtimes.com/article/20121025/SPORTS/121029314/0/SEARCH

Goodbye Grandpa

Today we buried my dad.   He was 90 years old and was diagnosed a few years ago with Lewy Body Dementia Syndrome.  Over the years he had a few medical procedures performed and could no longer take care of himself.  My sister and I both took care of him for the last 3.5 years of his life.  He leaves behind my sister and me, 6 grandchildren, 6 great grandchildren and 7 great great grandchildren.  He lived a long life.  We had services that would make anybody proud.  He was a WWII veteran and was in the Navy aboard the USS Ozark.  He is now with mom up in Heaven after being apart from her for 18 years.  In the picture is my 18 year old who has Down Syndrome and is in the JROTC program at his school.  He presented the flag to my sister. 

We will miss dad tremendously.  RIP Dad.

My son, the Cadet

Student with Down Syndrome becomes JROTC Cadet

 

By John Richmeier

GateHouse News Service 

 

When enrolling her son Stephen at Leavenworth High School, Cindy Bartko has noticed a table for the Junior ROTC program. But she never pursued having her son join the program.

Stephen has Down syndrome.

But he was among the many JROTC cadets to appear in Thursday’s Veterans Day parade in downtown Leavenworth.

The high school sophomore began attending JROTC classes earlier this month.
He became involved in the high school program after he was invited to fire a JROTC cannon during an Oct. 22 home football game at the high school.

“He got a real kick out of it,” Cindy said.

Retired Lt. Col. David Black told Cindy JROTC officials would work with her son. Black is the senior Army instructor for JROTC at Leavenworth High School.

“He wanted Stephen to be in the program,” she said.

Stephen’s high school schedule was juggled in order to accommodate JROTC classes. Cindy said Stephen has someone to assist him in class.

“Our mission is to build better citizens,” Black said.

He said the other cadets learn something from having Stephen in the program.

“We as people tend to shy away from people with disabilities,” Black said.

The senior Army instructor said he also learns from having Stephen as a cadet.

Stephen lives in Basehor but attends special education classes at Leavenworth High School.

Cindy said her son feels a sense of pride in the JROTC program, which is visible in the way he carries himself.

“He just feels like he belongs, and you can tell that,” she said.

He began JROTC classes Nov. 1. Thursday’s parade marked the first time he wore a JROTC uniform.

Stephen also has attended Leavenworth High School home football games as part of a fundraiser program called First Downs for Down Syndrome and was named an honorary co-captain of the football team, Cindy said.

Copyright 2010 Leavenworth Times. Some rights reserved

Chapter 2: The long road home

Eric Waksmunski holds both twins, Shane, left and Wyatt, at home for the first time after Wyatt was released from the hospital. (All photos by Bob Ford/Times News)

In March, after a difficult pregnancy, Mary Anne Christo and her husband, Eric Waksmunski, were blessed with twins.

Anticipating the usual complications faced by premature babies, the couple also had to face the unexpected when both Shane and Wyatt were diagnosed with Down syndrome. According to the National Down syndrome Cytogenetic Register in London, it is estimated that of all births, there will be 14 or 15 sets of non-identical twins with Down syndrome in every 1 million births.
Before they could appreciate how rare their situation was, or how much their lives were about to change, the couple had to deal with the reality of their situation. Their babies were seriously ill.
Over the next few months they would face multiple surgeries and numerous infections. They would stop breathing or lose consciousness, and on at least one occasion, required CPR. It seemed for awhile that every day they faced a new challenge and a new danger, but eventually, after four months of hospitalization, with just a brief trip home for Shane, both babies would be well enough to leave the hospital.

Chapter Two of Shane and Wyatt’s story is about that long, hard journey home.

By KAREN CIMMS
kcimms@tnonline.com

 

When Mary Anne Christo gave birth in March, she and husband Eric Waksmunski were prepared for twins and for an early delivery, but the Mahoning Township couple was devastated to learn both boys had Down syndrome.

Shane and Wyatt faced the usual complications of babies born 10 weeks early. They needed CPAP machines, which forced oxygen into their tiny lungs. They had apnea, which meant they would often stop breathing; and bradycardia, which is a slowing of the heart rate. They also had jaundice — a high level of bilirubin in the blood that causes a yellowish cast to the skin and whites of the eyes.
The babies also had feeding issues. Being premature, they didn’t have a sufficient suck reflex to bottle feed. Both were given nasogastric feeding tubes that went through the nose and into the stomach.
Shane weighed 3.5 pounds at birth, while Wyatt was 3.4 pounds. As most babies do, they lost weight after birth, each dropping to under 3 pounds.

While their early birth and Down syndrome diagnosis were serious, neither was critical. There was even talk of sending them home in a few weeks.

“It was our emotions that were critical,” Waksmunski recalls.
“Yes,” agrees Christo, “it was a bad time.”

Mary feeds Wyatt at home for the first time.

Although Waksmunski and Christo, who are originally from South River, N.J., accept that their lives have changed, it was difficult in the beginning.

“The grief part of it took awhile to get over,” says Waksmunski. “But yet, that same day, March 6, that Saturday night, I was already on the Internet researching Down syndrome and already was thinking that we have to do something. I went into that mode instantly, but yet, I was still bawling my eyes out too.”

Christo remembers that night at St. Luke’s Hospital in Bethlehem well.
“It’s a good example of how men and women deal with grief and situations differently,” she recalls. “Because really, he was a rock to me, but he was still saddened and devastated and had all those feelings of loss, but he was able to quickly turn it and just say, ‘Well, if this is what it’s going to be, then this is how we have to deal with it.’”

As the weeks passed, Christo and Waksmunski dealt with their emotions and prepared to welcome the twins home. Waksmunski returned to his job as a regional loss prevention manager for Urban Outfitters, while Christo, who left her job as a registered nurse at Blue Mountain Health System months earlier due to complications with her pregnancy, cared for their son, Jesse, who was almost 3. They took numerous trips to Bethlehem, waiting for the day the doctors would let them bring their babies home.

By mid-April, it looked like that day was just around the corner. Wyatt was up to 5.13 pounds and Shane weighed 5.6 pounds. Wyatt was scheduled to go home April 30. Shane wasn’t to be too far behind him.

But days later, they learned Wyatt would not be going home, and there was discussion that Shane might need surgery.

The roller coaster ride was just beginning.

In early May, there was talk that Shane would be coming home. Wyatt was diagnosed with aspiration pneumonia (caused by breathing foreign materials into the lungs, in this case — formula), and would need to remain in the hospital awhile longer. Within days, Shane began to have a high number of apnea and bradycardia incidents. Doctors began to link the events to feeding issues, and expressed concerns about the babies aspirating. Discussion of a homecoming for either baby was put on hold.

Jesse sits on the couch with his mother as she holds Shane shortly after he came home from St. Luke's Hospital. At the time Shane was still getting his nutrients from a nasogastric feeding tube.

It became common for the Waksmunskis to hear on one day that either Shane or Wyatt might be sent home, only to learn the next day, that they would not.

The apnea and bradycardia incidents began to increase, with Shane having 14 incidents in just one day. The doctors were concerned both babies had reflux issues, which meant the food they were eating was leaking back into the esophagus. Both boys were being fed during the night via feeding tubes. During the day, they were bottle fed small amounts of formula.
On Mother’s Day, May 9 — the twins’ original due date — there was still no more talk of when they would be going home. As the apnea and bradycardia issues continued to increase, bottle feeding was stopped and both boys remained on a continuous tube feed.
By the middle of May, medical personnel again discussed sending Shane home. One day it was on, the next day it was off.
Finally, almost 11 weeks after he was born, Shane went home, while Wyatt remained at St. Luke’s in the Neonatal Intensive Care Unit.

Home, but not for long
The Waksmunski’s dining room was turned into a nursery, with matching cribs and a changing table. The playful jungle-themed bedding and mobiles stood in stark contrast to a host of medical equipment — from oxygen to heart monitors, as well as overnight nursing care — that welcomed Shane home.
Shane’s first few days at home were uneventful, but that would not last. As his food intake increased, so did the number of reflux incidents.
On the evening of May 30, Shane’s heart monitor went off 10 times. The next day he was rushed to the emergency room.
Doctors at St. Luke’s suspected an infection and recommended he be transferred to a children’s hospital. The decision was made to take him to Janet Weis Children’s Hospital in Danville.
At Janet Weis, doctors discovered a growth near Shane’s testicles. Surgery the following day was deemed to be a success, but the next morning, as they prepared to take him home, Shane went unresponsive. Christo worked on reviving him while Waksmunski ran for help.
Shane had experienced severe reflux, which caused a vasovagal (or fainting) episode.
“I never knew, and I still don’t understand how reflux can trigger so many things,” says Waksmunski. “It can stop your heart; can stop you from breathing; it can put you unconscious, and I never knew all that.”
The Waksmunskis believe that while the babies were in the hospital, the amount of food they received was small enough to keep them from refluxing. When Shane came home and his food intake increased, even a little, he began to reflux more.
After Shane’s vasovagal episode, the doctors ran more tests.
“They said ‘this kid’s in bad shape,’” recalls Waksmunski.
The couple now had two very sick babies, in two different hospitals, over two hours away from each other.

Wyatt takes a ride
Doctors at Janet Weis consulted with doctors at St. Luke’s and determined Wyatt was having the same problems as Shane. It was recommended he be transferred to Janet Weis.
Before he had his first car ride or slept in his own crib, Wyatt took his first helicopter ride, flying 120 miles from Bethlehem to Danville.
In the meantime, surgery was again discussed for Shane. Doctors recommended a procedure called fundoplication, which would create a flap at the bottom of the esophagus, and prevent food in the stomach from refluxing into the esophagus. They also wanted to insert a gastrostomy feeding tube (G-tube), which would be placed through his abdomen into his stomach. Wyatt would likely face the same procedure.

Mary Anne Christo uses her fingers to support Shane's mouth and initiate a sucking motion. Both boys had difficulties with their sucking reflex after they were born, which is common with premature babies.

While Christo’s medical background helped her understand the risks and benefits of such surgery, Waksmunski wanted more information. He posted a message on the Facebook page he created shortly after the babies were born — “Shane and Wyatt’s Journey with Down syndrome” — asking for input from parents whose children had experienced feeding tube placement and fundoplication. The response was overwhelming.
In addition to dozens of public comments on Facebook, he received nearly 100 e-mails from parents, which included telephone numbers so he could call them back to discuss their experiences. That input, coupled with research and an understanding of the needs of his children, helped him also agree to the surgery.
When Wyatt experienced an incident similar to Shane’s, it was decided that he too would have the surgery.
On June 11, Wyatt was wheeled into surgery first, followed by Shane. Afterward the babies were moved to separate rooms on the pediatric floor.
Both surgeries went well, but by late evening it was clear Wyatt was in crisis.
“Wyatt didn’t seem to be doing well after the surgery,” recalls Christo. “It was apparent that he was really struggling — struggling to breathe, struggling to survive.”
She held an oxygen mask to Wyatt’s face and over the course of the evening, his heart rate and oxygen levels continued to drop.
Waksmunski decided to find a nurse and request a nasal cannula, which would secure the oxygen tube to Wyatt’s nose. Almost the moment Waksmunski left the room, Wyatt coded.
“All of a sudden, he literally crashed, and babies can crash very quickly,” explains Christo. “Eric probably got outside the door, and I thought that I (whispered) ‘Rick,’ but instead, I had yelled, and he had heard me. I just started CPR immediately because I wasn’t going to take time to start yelling. I just put the baby down on the bed and started CPR.”
Waksmunski came back into the room and hit the panic button.
Christo continued CPR until the hospital staff took over.
“He was death blue,” says Christo. “I know what a dead baby looks like, and when I put him on the bed to do CPR, I thought he was dead. I truly did.”
Although the stress of the past couple months could have put Christo over the edge, she admits that remaining calm in the face of a crisis is her strongest trait.
“In times of stress, if someone is hurt or sick, I am able to remain calm and not lose focus. That quality saved my son’s life,” says Christo.
“When it comes to health, and I think that’s because I was raised by a mother who was always ill, I’m always calm,” Christo continued. “I’m always able to hold my head, and that’s how I was. When that happened, it just felt like my brain had split into 20 pieces. It was like ‘OK. Remain calm. OK. Start CPR.’ All these little things. I didn’t lose it until after I stepped away and they started working on him.”
“You became a mom again,” recalls Waksmunski.

More rough days ahead
It turned out that Wyatt, and apparently Shane as well, had a reaction to the morphine given to them after surgery, and it suppressed their breathing. They were both moved back into the pediatric intensive care unit.
“There were a number of times they needed advanced care to resuscitate after that,” says Waksmunski. “They were in real critical care for that time period.”
The next day, after a long stressful week, much of it spent at the hospital, the Waksmunskis checked in on their sons before heading home to see Jesse and to sleep in their own bed.
When the phone rang sometime after 8 p.m. that night, it was not good news. Wyatt was being rushed back into surgery. His incision had opened and his bowel was exposed, putting him at high risk for infection. The Waksmunskis set out on the two-hour drive back to the hospital.

Mary Anne Christo looks at Wyatt while in his crib at Janet Weis Children's Hospital in Danville.

During surgery, one of Wyatt’s lungs partially collapsed and he was placed on a ventilator.
Back at home the next night, the surgeon called about Shane. His incision was leaking and there was again concern about infection.
The next morning, they were advised that Wyatt’s condition had worsened and he was being moved into isolation in the PICU as it was suspected he had a virus or an infection. His lung hadn’t improved and he would remain in a drug-induced coma and on a ventilator. Later in the day, another call advised them that Shane may be heading back to surgery.
The following day, Wyatt was improving and plans were made to begin weaning him off the ventilator, but later in the day, he crashed again.
The stress was clearly getting to the Waksmunskis. Almost every day they were faced with life-and-death situations.
And it wasn’t getting any better.
The next evening, after leaving the hospital and heading home, they got a phone call just a mile from their home. Shane was being rushed into the operating room. They emptied their suitcases, filled them with clean clothes, and headed back to the hospital.
Shane came out of surgery around 2:45 a.m. He was put on a ventilator as his left lung wasn’t ventilating.
After a few days with no major incidents, medical personnel again discussed sending the boys home.
But again, things went awry.
On Father’s Day, just after midnight, the phone rang. Wyatt was running a fever and his white blood cell count was very high. After a spinal tap, doctors suspected meningitis or some other type of infection. There was even some concern about leukemia.
Shane was showing similar signs; no fever, but his white blood cell count was rising. The boys were put on antibiotics to fight the infection.
“They really went through a couple-week period where it was really life or death, because they weren’t reacting well,” recalls Waksmunski. “They were having infections. They kept going back into surgery and what had happened was they took a beating on their little bodies, and then that’s when they put them both on ventilators and put them in a drug-induced coma for a few days to rest them, because they said ‘We can’t keep doing this. They’re not going to survive.’”
Near the end of June and after almost four months of hospitalization and weeks of life and death moments, the twins began to have more good days than bad. They were still fighting infections and setbacks, but they were feeding and slowly growing stronger. It also appeared the fundoplication surgery was working.
“They’re feeding, and they’re feeding by bottle,” says Waksmunski, “and they are not having the apnea and heart rate issues. They seem to be doing better.”
Although the twins were still in the seven-pound range a couple weeks after surgery, their ability to keep food down was enabling them to start gaining weight — something they both desperately needed.

A long time coming
After months in the hospital, thousands of miles in the car, tens of thousands of dollars in gas, food and hotel expenses, and over $2 million in medical expenses, the time finally arrived.
Shane and Wyatt were coming home!

The Waksmunski's SUV heads up the driveway on July 5 with Wyatt inside. Wyatt spent the first four months of his life in a hospital.

On Friday, July 2, Waksmunski made the following post on Facebook:
“TODAY!!! We are heading to the hospital soon to get Shane. HEY SHANE, Mama and Papa are coming to bring you home, again … for good! Wyatt, coming back Monday for you so pack your bags and get ready to start life at home. Four months is way too long to stay in the hospital. One day, we are going to Disneyland!!!!”
And true to those words, three days later, Wyatt came home.

Keep reading the TIMES NEWS for future stories on the Waksmunski family and their journey with Down syndrome. You can also log on to the TIMES NEWS website at www.tnonline.com for this and all of the stories in the series, “Down syndrome: A family’s journey.”

Feeding tubes and fundoplication

By AMY MILLER

amiller@tnonline.com

Over the last few months, Shane and Wyatt Waksmunski have experienced numerous treatments to help them take in essential food and nutrients; as well as be able to keep it down. Here is a list of procedures and devices that have been used to help the twins grow stronger.

Big brother Jesse checks out one of his new baby brothers after Shane came home from Janet Weis Children's Hospital.

Fundoplication surgery
Fundoplication surgery is used to help individuals with chronic gastroesophageal disease or GERD.
According to Dr. Ahmed Hasan, chief of gastroenterology at Blue Mountain Health System and a board certified gastroenterologist and internist, GERD occurs when the lower esophageal sphincter (LES) valve, located at the base of the esophagus, does not fully close, resulting in stomach acid and contents backing up into the esophagus, causing excessive heartburn, overall discomfort, and sometimes vomiting.
When GERD or acid reflux cannot be controlled by medications in children, fundoplication surgery may become an option.
Dr. Ronald Scorpio, director of pediatric surgery and surgeon-in-chief at Janet Weis Children’s Hospital, and the surgeon who treated Shane and Wyatt, explained that fundoplication is “an operation to create a valve at the bottom of the esophagus to prevent food from leaving the stomach and going back into the esophagus.”
The procedure, which takes a portion of the upper stomach and wraps it around the base of the esophagus, will usually restore the proper function of the LES without obstructing food intake.
Scorpio noted that excessive acid reflux and GERD in infants is typically more severe and could cause pneumonia or other complications.
There are benefits and risks to the surgery, Scorpio and Hasan both explained.
Benefits to having the fundoplication surgery include the improvement of digestion in the patient, no more reflux, and helps children get the nutrition they need.
Risks include trouble swallowing, not being able to vomit or belch, infections at the surgery site, anesthesia reactions, and the procedure not taking and becoming undone.
Scorpio said that the procedure is usually a long-term fix to a child’s reflux problem, but sometimes it fails. In children with health problems, a higher failure rate has been reported. If the procedure fails and symptoms return, the child is reevaluated to see how severe the reoccurrence of reflux is and if surgery is necessary or if it can be managed through medications.
Feeding tubes
There are four types of feeding tubes that the twins experienced: NG-tube, NJ-tube, G-tube and MIC-KEY button.
The NG- and NJ-tubes are both short-term feeding tubes that allowed the infants to receive the nutrition and medications they needed.
Both tubes are passed through the nasal passage. The NG-tube, or nasogastric-tube, ends in the child’s stomach. It is usually inserted to help the stomach drain or to give the child the food he needs to survive.
The NJ-tube, or nasojejunal-tube, goes one step farther. After being inserted into the nose, it travels through the stomach and into the small bowel or jejunum. The child is then given food and medications without worrying about reflux.
A G-tube, or gastrostomy-tube, is similar to the NG- and NJ-tubes, in that it provides a way for the child to receive necessary nutrition.
The G-tube is inserted directly into the stomach through the child’s belly wall. It is done through a procedure known as esophagogastroduodenoscopy or EGD. During the procedure the doctor cuts a small incision into the left side of the abdomen and inserts a flexible tube with a special tip or balloon into the opening.
Scorpio added that a child who has the fundoplication surgery usually has a G-tube.
The MIC-KEY button functions the same as the G-tube, except instead of a tube extending from the child’s body, a port or button is inserted into the incision and lies flat on the belly.
Scorpio said that when it is time to feed the child, a flexible tube is attached to the button and then functions like a G-tube.

A Family's Journey

Down syndrome: A family’s journey

Posted on July 19, 2010 by Times News editor

In March, Mary Anne Christo and her husband, Eric Waksmunski, were blessed with twins.

Wyatt Waksmunski, left, sleeps as his twin brother Shane cries during a visit to Wyatt's crib in the hospital. (All photos by Bob Ford, Times News Photographer)

It was a difficult pregnancy and doctors determined the babies had to be delivered early.
Anticipating the usual complications faced by premature babies, the Mahoning Township family was devastated to learn both of their precious little boys have Down syndrome.
The next few months would be filled with countless sleepless nights, hotel stays and hospital vigils. The shock and grief Christo and Waksmunski first experienced is waning and they have accepted that their lives have changed forever.

For Christo, the dreams she had for the twins as she awaited their birth are no more. She has learned she can still dream, but they are different dreams now.

Their priorities have also changed. What was important in the days before the twins were born — in Waksmunski’s case, the ups and downs of his beloved New York Giants or Mets — is no longer important. Time once spent watching a game is now spent online, where he may be learning more about Down syndrome or researching a recommended medical procedure.
After too many nights going to bed, praying their babies would not die as they slept, the couple has learned to take one day at a time.

For as traumatic as this experience has been for the family, it has also opened their eyes and given them passage into a new world, a community of parents of children with special needs.
It is not a life they would have chosen had they been given a choice, but it is one that has embraced and supported them as they struggled to deal with often frightening and stressful days, filled with life-and-death decisions.

Several weeks after the twins were born, Waksmunski created “Shane and Wyatt’s Journey with Down syndrome,” on the social media network Facebook.

While it initially started with family and friends, it quickly grew and has attracted nearly 1,100 supporters from around the world.

Many of those who joined have children with Down syndrome or other disabilities.
To tell their story, and to reach out to other families who may face a similar experience, the Waksmunskis have agreed to open their home and their lives and share this special journey in an ongoing series in the TIMES NEWS. 

Chapter 1: A difficult pregnancy

By KAREN CIMMS
kcimms@tnonline.com
It was Sept. 2, her 42nd birthday, when Mary Anne Christo learned she was pregnant. She and her husband, Eric Waksmunski, 46, were looking forward to having another child. Their son, Jesse, was 2.

Eric Waksmunski and his wife Mary check on Wyatt before going to Shane's room during a hospital visit.

Days before Christmas, the Mahoning Township couple received another unexpected gift when they learned they would be having twins, two more boys to be exact. The family was overjoyed.
The babies were due May 9, Mother’s Day.

Almost from the beginning, Christo’s pregnancy was difficult. Within a week of getting the news, she developed hyperemesis, an almost disabling form of morning sickness that lasts all day, every day. As soon as she drank any fluid, she began vomiting, sometimes up to 50 times a day. The illness prevented her from working and required weekly visits to the doctor, and then the hospital, where she received intravenous fluids to keep from becoming dehydrated. She was eventually put on a medication given to cancer patients undergoing chemotherapy to help with the nausea and vomiting. It didn’t.

“It’s just hormonal,” said Christo, a registered nurse, who, like her husband, is originally from South River, N.J. “I have no idea why I got it, and only a percentage of women will get it. I got no relief from the medication. I remember thinking I could go to 38 weeks (a normal pregnancy is 40 weeks), and when I found out I was having twins, I was thinking I could possibly go even earlier.”
After experiencing the same thing when she was pregnant with Jesse, Christo knew delivering the babies would be the only relief she would get from the almost constant vomiting.
“You’re so dizzy constantly, as if you are out on a bad sea. Usually when you vomit, you feel better. But with this, you cannot get a reprieve. Your head is always spinning and you have to lie down all the time,” she said.

She knows of only two other people who have had the same experience.
According to the Hyperemesis Education and Research Foundation, approximately 10 percent of women will terminate a pregnancy due to complications of hyperemesis, and many more consider termination out of desperation. Failure to treat or insufficient treatment can result in metabolic imbalance and organ failure, and termination of the pregnancy could be recommended to save the life of the mother.

Shane locks eyes with his mother during one of the parents' hospital visits.

“Years ago, women would die,” said Christo. “You can’t take any fluids in.”
She was so sick when she was pregnant with Jesse that at six months, she didn’t even look pregnant. That was not the case with the twins.

Although she continued to suffer with the hyperemesis, her uterus was getting quite large — larger than it should be.

Having failed a quad screen test (a maternal blood test given between the 16th and 18th weeks of pregnancy and used to determine the risk of delivering a baby with an abnormality), it was recommended that Christo undergo a level 2 (or high level) ultrasound to give the doctors a better look at what was going on inside her uterus.
After the test, on Dec. 21, the couple learned Christo was carrying twin boys. They were told it was common to fail a quad screen when carrying multiples, and that the test showed no sign of any abnormalities in either baby, other than the amniotic sacs (the membrane that surrounds the baby and is commonly known as the ‘bag of waters’), appearing to be a little large.
It was something the doctors said they would keep an eye on.

“We left elated, thinking ‘Oh my goodness! We’re having twins. It’s the greatest thing. They’re both healthy and no problems!’ And that was probably the best Christmas I had,” said Christo.
But by early January, things started going down hill, and by mid-February, the pregnancy was in jeopardy.

“I was in the hospital probably two weeks before I gave birth to them because I was so ill,” said Christo, who had also developed polyhydramnios, which was causing an excess of amniotic fluid in the sacs. Polyhydramnios could have one or more causes, such as maternal diabetes mellitus (high blood sugar) and Down syndrome. It can also cause cord prolapse, which can result in the death of the fetus. The doctors also determined the placentas for both babies were defective.
As the amount of amniotic fluid continued to build up, Christo said her uterus was becoming “enormous.” One doctor said she was “a walking balloon, like a ticking time bomb.”

“The sacs could have ruptured from contracting,” Christo explained. “The uterus couldn’t handle all the fluid.”

Eric Waksmunski pulls the covers back to get a look at Wyatt during a hospital visit.

The buildup of fluid was causing serious problems for the babies.
“I was having an issue with my cords,” said Christo. “Baby B, who was Wyatt, his cord was closing. They were saying he wasn’t getting (enough) oxygen. They weren’t really sure, and they thought if they tapped me, and pulled fluid out of the sac, maybe that would give the cord some relief.”

The doctors removed a liter of fluid from “Baby B’s” amniotic sac, but the cord was still prolapsed. They could have tried the same procedure on “Baby A,” which was Shane, but did not want to keep poking the placentas.

Hoping to learn what was wrong with her placentas, Christo asked the doctor to send the tapped amniotic fluid out to be tested. She remembers the perinatologist tried to discourage her, saying testing wasn’t necessary as they had no concern about any type of abnormalities with the babies.
It would be a week before the results came back.
In the meantime, an early birth was looking more likely.

“They were monitoring the babies every day,” said Waksmunski. “She was hospitalized at that point and every morning she started with the ultrasound. They were monitoring the babies, the cords, the flow through the cord, and they were just holding off as long as they could.”
In preparation for an early birth, Christo was given betamethasone shots. A steroid, betamethasone is used to further lung development in a fetus when an early delivery is expected.
“It’s a two-shot process,” said Waksmunski. “They have to go a week apart, so once they start that process, you know you’re going to be early.” They gave her that second shot on a Friday. “They told us ‘tomorrow’s the day; get the doctors, we’re going to get the OR ready’.”
Christo was still 10 weeks away from her expected due date, but the risk to the babies was too great. To wait any longer could mean the loss of one or both of the babies.
“They said that Wyatt was probably within a week of passing, because his placenta and his cord were so bad,” said Waksmunski. “Every day they would make the decision, ‘is he better in mama or better outside?’ And then finally, they got to the point where they said, ‘that’s it, we got to go get him’.”

While taking one baby and not the other was not an option, it would only have been a matter of time with Shane, as his placenta was also deteriorating.

“Wyatt was just in more of a critical state,” added Waksmunski.
Doctors were unable to give the couple any answers as to why Christo was having so many problems.

“They said we were actually lucky,” added Waksmunski. “Some people they say, who have defective placentas, go through that process in their 20s (weeks), and deliver in their 25th or 26th week, and we were able to hold off until 30. They said there is a big difference between 30 and even 28 weeks and the development and the problems the babies could have.”
The couple began to prepare themselves for an early delivery. Having a Caesarian section with her first child, Christo expected to have a second one with the twins, just not so soon.
“So we knew the day before, and the only thing you are thinking is, they’re going to be early,” said Waksmunski. “So they might spend some time in the NICU (neonatal intensive care unit), depending on how they develop, and you know, you’re OK.”

“My whole thing was what is a three-pound baby going to look like,” said Christo. The nursing staff secured permission from the mother of a premie for Christo to see her baby.
“I just remember thinking, ‘Oh what a beautiful little baby. That’s fine, three pounds.’”
She knew what to expect, and was prepared, but neither she nor Waksmunski were ready for what happened next.

“When I think of the next day, oh my God, how my life changed,” recalled Christo.
Shane and Wyatt were born on Saturday, March 6. Doctors immediately suspected that Wyatt had Down syndrome, but were not sure about Shane.
On Monday, they received the results from the amniotic fluid Mary had requested be tested — Wyatt had Down syndrome; further tests proved that Shane did as well.
The odds against both boys having Down syndrome, especially being fraternal twins, were astronomical.

The Waksmunskis were devastated.

“All we did was cry for several weeks,” said Christo. “I felt like I lost a baby. I mourned as if I had lost a baby. I lost the children I thought I was going to have. It’s truly like a death, because you envision a life with these children and you anticipate for them, their future, and all the dreams you have, and then when you have them, when you are told they have Down syndrome, all that changes.”

With time, the shock and grief melted into acceptance and an understanding that their lives have changed.

“I truly, truly take life one day at a time,” she said. “People always say, you should just live for today, and I didn’t. I would dream for this in the future or this, or think of this, or 10 years down the road, and I truly only live for today, where I didn’t before.

“I really felt like, in the beginning, when this first happened, like I couldn’t dream, because what I had dreamed, was no longer an option anymore, so I just felt like I couldn’t dream anymore, but now, I’m just dreaming different dreams,” said Christo.
Waksmunski said his priorities have changed.

“What was important on March 5 is no longer as important on March 6 for us, even silly things. I’m a big sports fan, and I have yet to sit down and watch a complete baseball game this year. I find myself doing medical research. I find myself doing things to take care of my kids. I go to the hospital, and there was a time when it was hard to get me away from the TV, and today, is that the most important thing? So the Mets lost, so what? I think you learn how fragile life is.
“We’ve gone to bed many nights, hoping that our kids don’t die overnight. And that changes your perspective on life,” he said.

The first few months of Shane and Wyatt’s journey have been difficult. The boys spent many days fighting for their lives.

As the Waksmunskis faced these challenges, they opened themselves up to a new community where they found not only support, but became part of a new family that has embraced them, shared their stories, their ups and downs, and helped them navigate a new path, not the one they anticipated, but one that promises to have its own joys and special moments.

Next month, read about Shane and Wyatt’s months-long hospital stay and their long-awaited homecoming.

What is Down syndrome?

By AMY ZUBEK
azubek@tnonline.com
According to Dr. Brian Skotko, a physician in the Down syndrome program at Children’s Hospital Boston and a member of the board of directors for the National Down Syndrome Society (NDSS), Down syndrome is “the most common chromosomal condition in humans,” in that one out of every 733 single-baby births will have Down syndrome.
“It’s a condition where the person has extra DNA material,” he said.
According to the NDSS website, which Skotko recommends, the extra DNA material is “usually caused by an error in cell division called ‘nondisjunction.’ Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two.”
There are three types of Down syndrome: Trisomy 21, Translocation, and Mosaicism.
Each type has no known cause or cure and affects people in all races.

Trisomy 21 Down syndrome
Trisomy 21 is the most common form of Down syndrome, affecting 95 percent of all individuals diagnosed with the chromosomal variation.
The DNA error occurs prior to or at conception, when a pair of chromosome 21s in either the sperm or the egg fail to separate properly.
The extra chromosome is then reproduced in every cell that is developed, resulting in 47 chromosomes being present in all cells, rather than the normal 46.

Translocation Down syndrome
Translocation is known to affect 3 to 4 percent of individuals with Down syndrome.
According to the NDSS website, “part of chromosome 21 breaks off during cell division and attaches to another chromosome, typically chromosome 14. While the total number of chromosomes in the cells remain 46, the presence of an extra part of chromosome 21 causes the characteristics of Down syndrome.”
This is the only form of Down syndrome that can be inherited, depending on the parent’s genetic material.
According to the Mayo Clinic website, if one of the parents is a “balanced carrier” of translocation, meaning that their genetic material is rearranged in some way, the odds of a child having Down syndrome can range from 3 to 12 percent, depending on which parent is the carrier.

Mosaicism Down syndrome
Mosaicism is the most rare form of Down syndrome, affecting only 1 to 2 percent of individuals with this condition.
It occurs when three copies of chromosomes are replicated in some of the cells during embryo formation. This means that some cells will have 46 chromosomes, which is needed for proper development; while others will have 47.
Editor’s note: Further investigation into Down syndrome, including causes, symptoms, diagnostic methods and more will be published in future installments.