The obstacles of being born too soon - The Explorer: News

The obstacles of being born too soon

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Posted: Wednesday, January 16, 2013 4:00 am | Updated: 11:19 am, Wed Jan 23, 2013.

For most parents, the birth of a new baby is a blessed day, but for some, it can quickly turn tragic, especially when the new bundle of joy comes early.

When Oro Valley residents Ryan Kedzierski and Gwen Mayo found out they were expecting twins, they were excited all the way through the positive ultrasound results and continued monthly visits where no problems came up. However, at week 25, excitement quickly turned to fear when Gwen’s water broke and she began hemorrhaging just before midnight on Nov. 18, 2010.

Having had healthy children before, Gwen said as she checked into an emergency room in Chandler, she wasn’t nervous because she wasn’t having any contractions or labor pains. She soon became scared, however, when the ER said they couldn’t handle the severity of the situation, and she would be flown to St. Joseph’s in Phoenix, which has a fully-equipped neonatal intensive care unit (NICU).

“At that point, I was completely terrified,” Gwen said. “I was bleeding terribly, and being air lifted alone. I don’t know… I might have been in shock when it all started.”

The next 10 days

In a pregnancy, doctors consider a fetus viable after 24 weeks.  Because Gwen was nearing 30 weeks, doctors worked to hold off delivery as long as possible. Soon, goals would be set, with the first being to make it the first 24 hours without delivering.

The mini goals were set with doctors warning Gwen and Ryan that the babies would be taken at any moment if their heart rate dropped, spiked or complications arose. At this time, the two baby girls were being referred to as Baby A and Baby B.

While both Gwen, 32, and Ryan, 30, were afraid of what the near future held, both said reality hit quickly when they realized there was nothing they could do. The couple agreed that when they first get there, they were naive and have no idea of what was going to happen.

“You can’t control any of it,” Ryan said. “At this point, you have to put 100-percent of your trust into the medical staff and hope for the best. You just can’t control the situation.”

After making it the first 24 hours, Gwen spent the next 10 days taking magnesium, having a blood transfusion, and going through all the side effects of pregnancy and the medication to protect the babies.

On day 10, Gwen said she was feeling better and sent Ryan home for rest. Later that evening, she started freezing.

“I just couldn’t warm up,” she said. “I was teeth-chattering freezing. I had a headache and knew something wasn’t right. I just felt so cold. I felt like someone was tearing my skin off.”

After a short time, a nurse called the doctor in for a consult. Soon, doctors found that Baby B’s heart rate was out of control, and it was time to deliver through a Caesarian section.

The Delivery

Once doctors decided they couldn’t wait any longer, there was a 25-minute preparation period, which was also the amount of time Ryan had to make it back to the hospital. Gwen said it was just like out of a movie, he literally made it to the hospital room as doctors were saying they couldn’t wait any longer.

Staying awake for the procedure, Gwen said it was, “Like I was viewing the whole thing from outside my body.”

Soon, the babies went from just being Baby A and Baby B to having names. First, Sophia (Baby A) was pulled out and quickly stabilized. However, Bella (Baby B) wasn’t as easy. She was laying transverse, which means she was lying across the stomach, and not in the correct position for delivery.

Bella was stuck, and Gwen described doctors working hard to get her out, and once they did she was bloody and wasn’t breathing. The complications centered on the fact that the placenta and water protecting Bella broke 10 days before.

“It was like a minute, but it felt like an eternity when they were trying to get her to breathe,” Gwen said.

The births were two minutes apart, with Sophia weighing 1 pound, 12 ounces and Bella weighing 1 pound, 11 ounces.

To get Bella’s heart rate going, she had to be shocked, which Ryan watched.

“We were told at that point that she wouldn’t make it 24 hours,” he said.

For Sophia, she had fewer problems than her sister in the birthing room, but the level of uncertainty for Ryan and Gwen would increase over the next few days.

Day One

With Sophia breathing on her own, all of the attention had turned to Bella. She swallowed a lot of blood, and doctors were struggling to get her heart beating regularly.

“We were told at that point that we needed to decide whether or not we wanted to keep going with her,” Ryan said. “They shocked her and her vitals started improving.”

From that point, Gwen was recovering from a C-section, while Ryan started going back and forth between Sophia and Bella every 20 minutes.

On day one, as Bella started improving, it was Sophia who started having problems. She wasn’t controlling her vitals, and Gwen and Ryan were soon faced with hard decisions.

“They told me they couldn’t control her vitals and we needed to decide what we wanted to do,” Ryan said. “We were even asked if we wanted a priest present. At 4 p.m., we were told we would know within hours if she would live or die.”

Both babies went through a series of tests, and the major concern was that both Bella and Sophia had suffered brain bleeds.

Day-to-day

On the second day, Ryan and Gwen were told that the specialist needed to speak with them. At that point, they were told Sophia’s right side suffered a tier 4 brain bleed, which is also known as Intraventricular hemorrhage (IVH). Doctors said the good news was the left side could compensate for the right side. 

Intraventricular hemorrhage (IVH) of the newborn is bleeding into the fluid-filled areas (ventricles) inside the brain. The condition is most often seen in premature babies.

Infants born before 30 weeks of pregnancy are at the highest risk for such bleeding. The smaller and more premature the infant, the higher the risk for IVH. This is because blood vessels in the brain of premature infants are not yet fully developed and are extremely fragile. The blood vessels grow stronger after 30 weeks of pregnancy.

IVH is more common in premature babies who have had respiratory distress syndrome, high blood pressure, and other conditions. The condition may also occur in healthy premature babies who were born without injury.

Soon after being told Sophia had bleeding on the right side, doctors told Gwen and Ryan the situation was much more severe, and she had a 4-tier bleed on both sides of her brain.

 “I was devastated and it was so hard to wrap my head around all of it,” Gwen said. “We were first told Bella wasn’t going to make it, and then, a flip flop and we were told Sophia wasn’t going to survive.”

Bella had also suffered a brain bleed, but doctors thought it was a lot less serious than Sophia’s.

Ryan and Gwen said having the babies in the NICU was a roller coaster. It felt like every time they would take a step forward, they were taking two steps back. 

“There comes a point where you have to do whatever you can just to get your mind off of all of it,” Ryan said. “For me, it was work.”

Just like at the beginning, doctors started setting daily goals for the two babies. Four days after delivery, Gwen was sent home, which meant she was calling to see if the babies had survived every night before going to sleep, and every morning when she woke up.

“You never wanted to get that phone call from them,” Gwen said. “You don’t want the call telling you your child died.”

By Day Five, Gwen was told Bella was improving, and she would get to hold her for the first time, which quickly became a bitter-sweet moment.

“When I picked her up and started to hold her, I was immediately told to put her down and go with the doctors to talk about Sophia,” she said. “I refused. You cherish the seconds and minutes you have to hold her, and I told them to talk to Ryan.”

Ryan was taken into a private room where he was surrounded by doctors, hospital staff, social workers and a security guard.

Doctors proceeded to tell Ryan that with both sides of her brain bleeding, Sophia’s quality and length of life had diminished.

“I was told she would be a vegetable that would ruin my life,” he said. “I was told she would just lay in bed and do nothing. I was so angry that a doctor could sit there and say all these things.”

Gwen and Ryan were given three options regarding Sophia. The couple was told they could do nothing and see what happens, they could sign a do not resuscitate order, or they could take her off all treatment and wait until she dies.

The couple were told if they choose to let her go, they would be put into a private room that is similar to a hotel room to wait. 

However, with Sophia breathing on her own, the couple was told it could take days.

Coming from a background in sales, Ryan said he was angry because it felt like the doctors and social workers were trying to sell him on the idea of just letting his baby die.

Not wanting to make a decision immediately, Gwen and Ryan waited and watched over the next few days. After about five days, Gwen said the answers were a lot more clear.

“It came down to we weren’t going to play God,” she said. “If she wasn’t meant to live, then something would happen. If she was going to keep fighting, we were going to keep fighting for her.”

Still, doctors were going by the data and the test results, and were persistent in telling Ryan and Gwen that if Sophia lived, she would “ruin their lives.” Doctors warned that due to the damage to her brain, Sophia would never smile, would never talk, would never walk and would never function like a normal child.

“We just wanted to stay positive,” Gwen said. “Every day we just worked to get to the next day. Then, I held Sophia’s hand. She knew I was there, and we knew we made the right decision.

After 57 days in the NICU, Bella was released to go home, weighing 4.2 pounds. After 75 days in the NICU, Sophia was released, weighing five pounds.

Two years of progress

Bella and Sophia recently celebrated their second birthday, and Gwen and Ryan continue to believe they made the right choice in those early days when they decided both babies were worth fighting for.

Today, Bella continues to do well. She walks, talks and acts like any other two-year-old. She enjoys watching football with her dad, and loves playing in the driver’s seat of mom’s car. While Bella is behind developmentally, as is the case with most premature babies, she continues to do well. 

For Sophia, it is  clear that doctor’s were wrong in their prognosis two years ago. With mom cheering her on, and a big smile on her face, Sophia recently showed just how far she has come. With braces on her legs, and some assistance, Sophia can take multiple steps. 

As therapy continues, she is holding herself up, she is speaking more words, and she continues to do exactly what Gwen said she would do – she fights.

 

(Editor’s Note: Ryan Kedzierski is the Publisher of The Explorer, and board member for the March of Dimes organization, which aims to educate and prevent premature births. For more on the dangers of elective early delivery, see the story online at www.explorernews.com.)

© 2014 The Explorer. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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