WASHINGTON – Crystal Montgomery of Washington was 23 weeks pregnant when she had a sonogram and found out she was having a baby girl.

It was also during this sonogram that doctors told Montgomery her little girl had a rare and severe heart defect that would require high risk open heart surgery days after giving birth.

WASHINGTON – Crystal Montgomery of Washington was 23 weeks pregnant when she had a sonogram and found out she was having a baby girl.

It was also during this sonogram that doctors told Montgomery her little girl had a rare and severe heart defect that would require high risk open heart surgery days after giving birth.

“They said 100 percent fatal. We were given the option of terminating the pregnancy, compassionate care or surgery,” Montgomery said.

Montgomery said she and her husband, Aaron, chose to give their daughter a chance to live with “half a heart.”

Isabel An Montgomery was born Jan. 5, 2008, with Hypoplastic Left Heart Syndrome, a rare congenital heart defect in which the left ventricle of the heart is severely underdeveloped.

Montgomery said prior to Isabel’s first open heart surgery at nine days old, the doctors found an additional defect or fistula, which they were afraid would affect the outcome of the surgery.

“She had about every complication possible and struggled for months. We were able to take her home at six months old, but spent the next month in and out of the hospital several times,” Montgomery said.

“She was so fragile that just crying could give her a heart attack,” she added.

Montgomery said the family had to stay home with very minimal contact with family or friends due to her low reserve to fight off infections.

“Even a common cold could easily mean her death,” Montgomery said.

The excessive hospital stay and her complicated care was a huge burden on the family.

“Isabel has four older siblings and they got lost in the chaos of caring for such a medically fragile child,” Montgomery said.

Isabel’s second surgery was done at 10 months old and Montgomery said she made it through with flying colors.

“For the next couple of years, we settled into a new normal. Isabel thrived. She grew, learned and became quite the princess of our house,” Montgomery said.

When Isabel was 3 years old, doctors felt it was the right time to perform her third and final open-heart surgery.

The surgery failed.

“She struggled with recovery. She was stable, but never thrived. She kept getting sick for no reason,” Montgomery said.

On Jan. 24, Isabel was diagnosed with congestive heart failure.

The Montgomery family fell back into the revolving door routine at the hospital as they tried to manage Isabel’s doses of oral heart medications to control the heart failure.

“We finally got her to a manageable point in April of this year. She was staying stable with weekly oversight of her doctors. We fought with this until July,” Montgomery said.

July is when Isabel’s signs of heart failure started getting worse and the family was forced to admit her to the hospital once again.

Montgomery said the oral medications were not working and the intravenous-only heart medications weren’t doing the job either.

“We were once again faced with some tough choices – take her home and keep her comfortable or pursue a transplant,” Montgomery said.

The family decided on the transplant route and at the beginning of August, was soon on their way to Lurie Children’s Hospital in Chicago.

The first week was filled with testing and multiple doctors coming in hourly as Isabel declined in heart function faster than ever.

On the evening of Aug. 16, Isabel lost the ability to control her own blood pressure and was put on an ECMO, a life-saving machine that does all of the work of the heart and lungs in order for them to recover.

“She was almost out of time. Then on Friday morning, Aug. 17, I was awoke by a call at 2:30 a.m. It was the call,” Montgomery said.

Isabel had matched a donor and was next in line for a heart. The surgery started at 9 a.m. that same day.

“However, the surgeon was quite clear that our little girl was very sick going into this surgery and may not make it,” Montgomery said.

After nine hours in surgery, Isabel was put back on the ECMO due to severe bleeding.

“An hour after coming back from the operating room, Isabel started to bleed to death. The surgeon opened her up right there in the room to try and stop the bleeding,” Montgomery said.

Isabel’s bleeding got under control and she was able to get off the machine six days later.

“This makes our girl a three-time ECMO survivor, which in the medical world is pretty rare,” Montgomery said.

During the time of the surgeries, Montgomery and her husband would put up daily posts on

Facebook about how Isabel was doing and she said the response has been amazing.

“From old high school acquaintances to strangers, everyone was moved by our struggles and an outpouring of prayer and support came to us. Facebook has been our main source of informing everyone of all the ups and downs,” Montgomery said.

She added some close and dear friends and family swooped in and took care of the daily routines of their other children and set up a care calendar with an organized meal schedule.

A bake sale during the Washington Arts Festival raised money for the family and helped them get by during the first few weeks of being in Chicago.

There is also a benefit planned at Kep’s in Washington sometime in October.

Even with some discounts provided by the hospital, Montgomery said food and housing expenses have been taking a toll.

“This has all been very hard for us to manage emotionally and financially. With me living in Chicago and being here for Isabel, it is hard to be away from the rest of my family,” Montgomery said.

Montgomery said Aaron tries to work four long days each week to get most of his work hours in, so he can then come see them mid-week and also try to bring the other children on the weekends.

Montgomery is staying at the Ronald McDonald house with Isabel until she gets discharged.

“With rejection being a huge concern, the hospital needs us to be close and to follow Isabel even closer. There will be numerous doctor visits and therapy appointments the first few months following the first discharge,” Montgomery said. “Our hope is to be at a point that the doctors are comfortable with so we can be home in Washington by Christmas,” she added.

Montgomery said now she sits and watches Isabel as she slowly gets better most days and then a bit worse on others.

Isabel’s lungs have damage from extended ventilator use and trauma from her first surgery.

She also has very limited use of her right side and doctors are working to get her off the ventilator by using intensive physical therapy.

“We have a long road ahead of us still, but we have our girl and that is enough to carry us through tomorrow,” Montgomery said.

The Children’s Organ Transplant Association has set up a website for Isabel where people can make donations to the family to help with her transplant-related expenses.

For more information, visit www.cotaforisabelm.com.