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Posted March 10, 2013 | comments Leave a comment

Die or try: Local couple takes risk to grow family

By Kim Walter

EDINBURG -- In the past two years, Krista Smith and her husband Matt have watched their family double in size after thinking it might not grow at all.

The couple moved from a large city in Kentucky to their current home in Edinburg with hopes that the "small town life" might help with their struggle to conceive. Smith suffered a miscarriage after the two had been married for seven years, and didn't want to wait another seven for a second try. A month after the discouraging event, she felt emotionally ready to start trying again.

During the summer of 2010, the Smiths became certified to adopt or be foster parents.
Just a few months later in November, though, they would receive even more exciting news.

"We found out that I was pregnant, and then two weeks later we got the call saying we would be able to adopt a little girl," Smith said as she sat in the office of Valley Baptist Daycare, where she works. "It was great. I was nervous ... but everything seemed to be going so well."

About 20 weeks into the pregnancy, Smith and her husband went to the doctor to find out the baby's gender, a process which normally takes 10 to 15 minutes.

After an hour without word from the doctor, the two began to worry.

The couple's midwife eventually told them that there were "a lot of abnormalities" showing up. The baby appeared to have an excess of fluid in its stomach, chest and behind its neck.

The doctor quickly set up an appointment for the two at the University of Virginia Medical Center in Charlottesville.

Two days later, they were given a partial diagnosis.

"We were told that the baby had severe hydrops, either because of an infection or just ... because," Smith said. "We were hoping it was from an infection, because then there was a chance that it could resolve itself."

Hydrops fetalis is a condition in which large amounts of fluid build up in two or more body areas of a fetus or newborn. Symptoms often depend on how severe the condition becomes.

Smith was told to go back to Charlottesville after two weeks to see if anything had changed with the baby's status. The time passed slowly, and Smith said she prayed often and looked for as much counsel as possible from family and friends.

Unfortunately, upon returning to the medical center, she learned that the baby's situation was unchanged and her options were limited. The doctor informed Smith and her husband that even if the baby survived the full term, it would die after being born. She was told to keep a journal of the pregnancy if she chose to continue, so that she would "have some memories."

"Then he told us to get an abortion," Smith said. "He told us it was the most humane thing to do."

The Smiths told the doctor that an abortion was not a possibility.

"I'd felt the baby kick, felt it move ... I knew it was there," she said.

The doctor said that no one in the region was doing anything with hydrops fetalis, and even if there was, he didn't think anyone would try.

He then put it in black and white terms: Smith would feel the baby have a heart attack inside her, leading to its death.

"My husband asked him to leave the room," she said. "He told us three times to get an abortion, and I just didn't want to hear that anymore."

Smith's mother-in-law was friends with a head nurse in Kentucky who explained that research and procedures concerning the condition were taking place at the University of Maryland Medical Center in Baltimore.

They made an appointment right away.

The doctor there confirmed that the baby -- a boy -- had as bleak an outlook as the medical center doctor had suggested, but there was an option.

Shunts would be implanted in the baby to drain excess fluid. The doctor told the couple that though the procedure had been done a number of times, he hadn't had an outstanding success rate. He also said that it would be painful for Smith, since very little anesthesia would be used to ensure that the baby remained active.

"He said it would feel like a telephone pole was being shoved into my stomach," she said. "But, it was either the baby dies or we try ... so we tried."

During the first procedure, Smith said she almost passed out. However, it was successful. She was able to watch her son's reaction to the shunt via ultrasound.

"His lung opened up and his heart shifted into place, so we could tell it was working," she said. The shunt didn't drain fluid from the boy's other side, so Smith had to go back to Baltimore for the same procedure.

The second time around wasn't as easy. Twice the baby boy moved out of the way of the large needle, but after a little shifting, the shunt was put in.

"It hurt a lot. I felt selfish lying there, scared, complaining about the pain, but then I had to tell myself that if this was the way my baby survives, then this is what I have to do," Smith said.

Toward the end of the pregnancy, the Smiths moved to Baltimore to ensure that the baby would be in a neonatal intensive care unit that could support him. In the meantime, their newly adopted daughter visited and stayed with family back in Virginia.

On Aug. 2, 2011, at 39 weeks, Smith was induced. She gave birth to Elliot the next day, who screamed and cried when the shunts were removed.

"That was what we wanted hear," she said, smiling.

The baby boy didn't require chest tubes or a breathing machine, but was required to stay in the neonatal intensive care unit for 27 days. His breathing rate, about five times that of a normal newborn, needed to be reduced, and doctors needed to test his ability to drink. Eventually, Smith was able to nurse him, and Elliot stayed on oxygen for his first seven months at home.

Doctors warned the Smiths that Elliot might be short and slow compared to other kids his age, but his mother said he's doing great with growth and has a "huge vocabulary."

"He's got a touch of asthma since his lungs weren't able to grow right away, but that could be completely gone by the time he turns four," she said. "Other than that, he's perfect."

After hundreds of tests, the Smiths were never able to find out what caused Elliot's illness. However, she and her husband plan to tell the boy, as well as his older, adopted sister, how they came to the family.

"He needs to know his story so he'll know not to take anything for granted," Smith said. "And honestly, his sister was a much-needed distraction. She gave us something to focus our attention on once we came home from the appointments and procedures."

Smith said the two are "best buddies," as they're only 13 months apart in age.

"I knew that God had a plan all along, but I didn't know exactly what it was," she said. "Maybe it was just so that other people could learn from our story, that there is help and there are doctors out there who will try."

Smith said the only other hospital she found that was doing a similar hydrops procedure was in Germany. Now, she and her family keep in touch with the Baltimore doctors, nurses and technicians.

"We were his biggest success," she said. "He said people like us make his job worth it ... people who are willing to do anything for their child."

As for advice to other families in a similar situation, Smith suggests that prospective parents get multiple opinions before making a decision.

She said it was extremely disappointing to get the second opinion from the medical center in Charlottesville, as she and her husband worried that was their best bet. She said her faith in God was something to lean on, even if she didn't understand what she was going through.

"We have two abnormal children -- one through social services and one through a miracle," Smith said. "We wouldn't change a thing."

Contact staff writer Kim Walter at 540-465-5137 ext. 191, or kwalter@nvdaily.com

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