Christmas season is time for miracles: Two-year-old with congenital heart defect doing well following second open-heart surgery
Wednesday, December 19, 2012 4:39 AM
The heart of the Christmas miracle is an unimaginable gift. The image of Mary holding Baby Jesus in the simplicity of a humble manager brings thoughts of holding newborn babies and the miracle of life's beginnings.
Christmas changed in 2010 when a journey began for Liz Miles of LeRoy and Eric Bridge of Spring Valley and they entered the world of “heart parents” when a month after the birth of their daughter, Ella, they found out she was born with a condition called congenital heart defect (CHD).
Terms parents of children with heart problems use:
CHD - Congenital heart defect: A heart abnormality present at birth
Heart cath - Heart catheterization: Cardiac catheterization involves passing a thin flexible tube (catheter) into the right or left side of the heart, usually from the groin or the arm.
OHS - Open heart surgery
VSD - Ventricular septal defect: Known as "hole in the heart"
Heart Mom or Heart Dad - A parent with a CHD child
Collateral arteries - Small narrow arteries supplying blood from the heart to her lungs.
IEP - Individualized education plan
Echo cardiogram - ultrasound image of the heart
A journey began for Liz Miles of LeRoy and Eric Bridge of Spring Valley with the birth of their daughter, Ella Marie Bridge on June, 27, 2010. Within a month of her birth, Liz and Eric were to discover that Ella had been born with a heart condition called congenital heart defect (CHD).
Ella thriving today, after 10 surgeries, is indeed a Christmas miracle.
As a native of southern Minnesota, Liz grew up in LeRoy and has three brothers: Chris, Mike (who died in March 2011) and Tom. After a year of schooling in Austin at Riverland Community College, Liz started working full time at Brownlow's Red Owl Grocery Store in LeRoy.
"When we found out about Ella," says Liz, "I became a stay-at-home mom. I recently began studying Child Development at RCTC."
Hailing from northern Minnesota near Brainerd, Eric came to the area to continue his schooling. A chef at Root River Country Club, located just south of Spring Valley, Eric was working for a class reunion when he was surprised to meet his fourth grade teacher and guidance councilor, Mr. Johnson.
"He was major influence on me becoming a chef," says Eric. "So, after I won 'The Taste of Mower County Chefs Competition,' I even looked him up when I went home to visit."
Christmas gatherings with Liz' parents, Kay (Billy) McCloud and Bill (Colette) Miles, and Eric's parents, Pam Bridge and Larry and Teresa Rolf, have been laced the last couple years with medical intervention.
The connections Liz and Eric maintain with friends and family lead them to consider early on that their daughter may have a health concern.
Eric comments, "I come from a big family and our first clue that there might be a problem came when we went for family pictures and we noticed that our daughter was half the size of my sister, Corrie's daughter, Lucy, who was just one day older than Ella."
Symptoms of CHD are sometimes unnoticeable in babies and children. The website of Mayo Clinic states, "Serious congenital heart defects usually become evident during the first few hours, days, weeks and months of life. Signs and symptoms could include: loss of healthy skin color, pale gray or blue skin color (cyanosis), rapid breathing, swelling in the legs, abdomen or areas around the eyes, shortness of breath during feedings, leading to poor weight gain."
"Less serious congenital heart defects are often not diagnosed until later in childhood. Your child may not have any noticeable signs or symptoms. If signs and symptoms are evident in older children, they may include: easily becoming short of breath during exercise or activity, easily tiring during exercise or activity, built-up fluid in the heart or lungs, swelling in the hands, ankles or feet. Serious congenital heart defects are often diagnosed before or soon after your child is born. "
Calling the doctor is suggested if a person notices that a baby has any of the signs or symptoms above.
Liz and Eric noticed that Ella seemed to be sleeping all the time and at her one month check up they started a journey they had never expected.
Liz noted, "Ella and I went to the pediatrician on Monday. She heard a murmur (hole) and Ella wasn't gaining enough weight. She sent us home with high calorie formula. When we went back on Friday, Ella had started gaining, but her heart sounded really bad. We were referred to Mayo. The doctor called us after we left and said 'I am going to try and get you in today.' But then called back again and with an appointment for Mayo on Monday because Ella was stable."
Eric remarks, "We were given news that changed our lives."
At Mayo Clinic after an echo cardiogram (ultrasound image of the heart) was done, the discovery was made that Ella had a congenital heart defect called pulmonary atresia with a ventricular septal defect (VSD) and collateral arteries.
"They told us that she will be lucky to make it to middle age," says Liz. "I felt scared, nervous, sad, angry, guilty and I wanted to know why. There is no known cause for her condition. They also did a lot of blood work and nothing abnormal came up. CHDs have no bias. They are the No. 1 birth defect and extremely under-funded in research."
It wasn't long before Ella was baptized by a retired priest of the Diocese of Winona, Father Francis Gallas. "She just stared at him as his booming voice sang to her," recalls Eric, "plus I think we were on every prayer circle in the U. S. Luckily, God answers."
On Nov. 11, 2010, Ella had her first open heart surgery and had a conduit put in place.
Liz added, "She was in the hospital until Dec. 3 and had a really hard time recovering. They left her chest open for three days because of swelling, and she had a really hard time coming off the breathing tube, including going into respiratory distress in my arms."
Eric continued, "I'll never forget walking in her room after surgery. Her chest had been left open ... tubes everywhere, IVs. It took my breath away."
The Caring Bridge entry written by "Auntie" Shannon VanHouten for the day of surgery read, "Text from Eric at 10:22 am. Ella is now on bypass."
Then later Shannon wrote, "I received a text from Eric reading 'She made it through the hard part. They are putting her back together now.' I don't know exactly what that means, but it sounds like good news! Amen. I'll keep posting as I hear more.'"
Liz added, "Ella spent the entire time in the cardiac ICU. Any child under one year of age stays there until they go home. We didn't get to see Ella until 8:30 p.m. Then we had to leave right away because she was clotting over her open chest."
Before Liz and Eric knew it, Liz' best friend, AJ Berk was busy planning a benefit for their family. "My uncle Randy McCloud planned the bike run and Lu Overrocker hosted the auction at her business, Sweets Hotel, in LeRoy," says Liz.
This outpouring of generosity surprised Eric, who said, "Being from a larger town, I never have seen a town that cared as much as LeRoy and neighborhood towns who came out to support people they didn't know well. They opened their hearts to Ella."
On March 13, 2012, Ella had her second open-heart surgery. The conduit was replaced and her VSD was closed. "This is considered a full repair," mentions Liz.
"Starting in May, we cut back on her feeding tubes and since October she has not been using it. Ella had an echo earlier this month and her heart looks good and she is going six months without seeing cardiology.
"Ella will need more OHS to replace the conduit as she grows (a conduit is expected to last anywhere from one to three years) and we are going to the pediatrician in January to see if she has gained enough weight to remove the gtube, which supplies her with nutrition she needs.
Liz added, "She was almost a year old and not crawling and right now she has caught up with both physical and mental abilities. Granted she will always be small but she is on the growth chart right now, which she wasn't for a long time. Ella acts like a typical two and a half year old."
"After 10 surgeries, we were given a little girl full of life and love. If we had to name all the people who helped or prayed for us it would be impossible ... from Austin to LeRoy to Spring Valley. This experienced showed me why people live in small towns. They actually do care when they ask how she is or how things are going."
Liz adds, "The people who supported us are an amazing group of family and friends. How can we possibly thank everyone? The child life specialist at Mayo, Ella's occupational therapist, Becky, Little Mended Hearts of SE MN (a support group for anyone effected by a CHD), and fellow heart moms, as well as the entire Community of LeRoy, everyone was so helpful."
The support of Eric's daughter. Falecia, was a gift itself. Sometimes the healthy children lose their "place in the family unit" as medical procedures are being completed and these children go unnoticed.
"Falecia, gave her love, her time, and she gave up a lot of her 'dad time' for surgeries. She would sit in school wondering if her sister 'made it ' and we are so thankful for all she sacrificed," comments Eric.
As an appreciation gesture for doctors, nurses and others who helped them at Mayo, Liz and Eric sponsored a special Thai cooking class. "We focused on Thai dishes and made mango margarita curried chicken, pad thai spring rolls, thia cashew chicken, and thia rice at the Leroy Community Center," says Eric.
"When Ella saw them walk in and her eyes got big, however, when they started cooking she warmed up and played with them. I'd sure like to thank my parents for coming down to help!"
As stories of Christmas Miracles flood the news media this time of the year we are given an understanding of the fragile gift life is and how resilient human beings can be.
As Ella's mother, Liz reflects, "When I look at Ella I see hope, strength, inspiration, a CHD warrior. Every time she smiles it warms my heart! This Christmas season I am so grateful for the support of family and friends, but especially for the chance to experience the joys of Christmas through the eyes of my daughter, Ella. Thanks everyone for your support, it is much appreciated!!"
For updates on Ella Marie Bridge's progress see Carrying Bridge at www.caringbridge.org and visit ellamariebridge.