Cambria’s Story

Posted by: Kevin St Jean

January
6

Cameron’s Crusaders recently had the pleasure to meet a little girl named Cambria and her family. She is the definition of happiness. All smiles, big hugs for everyone and just wants to tell you all about her day. Her dream is to become a ballerina when she grows up.

You would never be able to tell that Cambria has multiple Congenital Heart Defects.

Congenital heart defects (CHD) are the most common type of birth defect. CHD affect nearly 1% of―or about 40,000―births per year in the United States and she has one of the rarest forms.

Some CHD may be diagnosed during pregnancy using a special type of ultrasound called a fetal echo-cardiogram, which creates ultrasound pictures of the heart of the developing baby. However, some CHD are not detected until after birth or later in life. If a healthcare provider suspects a CHD may be present, the baby can get several tests to confirm the diagnosis. When Cambria’s Mom was pregnant, the ultrasound picked up on Cambria’s heart condition at 19 weeks and she was then referred to a specialist.

The initial reports from all the testing were not very good at all. Their Doctor prepared them for a possible stillborn birth. Her parents had to decide whether they were going to keep her or not because they were running out of time and couldn’t do another amniocentesis to make sure that’s exactly what kind of condition she had.  Due to the heart condition that was showing up, even if she did survive, she would have lived a very short life and suffered. After taking some time to think, her parent’s Wayne and Danielle had decided that they were going to keep her.

Newborn Cambria

Cambria was delivered via emergency C-section after her was mother induced a week early.

She ended up having placental abruption and then they lost her heartbeat. After the C-section her mother was in ICU for a few days, Cambria was doing excellent. The doctors could do further tests now that she was outside, to have a better understanding of what was going on. Cambria was diagnosed with multiple heart defects including DORV, sub pulmonary VSD, PFO, BAV with sub AS, LAA with NB, and hypo-plastic transverse arch s/p ASO, isthmus without CoA, pulmonary Stenosis, and trivial PDA. These are a lot of medical terms…with no known cause for any of them…not one person in her family, as far as they know has anything close to any of her diagnosis’s.

By the time she was 10 days old she started having cardiac arrest symptoms and severe edema. Cambria was rushed to UMass Medical where it was confirmed that she was in critical condition. They could not even get an IV in.  The decision was made to life-flighted her to Children’s in Boston, once she got there they could assess her better.  It took them 12 days to get her stable enough to have her first open heart surgery at 22 days old.

About 25% of babies with a CHD have a critical CHD. Infants with critical CHD generally need surgery or other procedures in their first year of life.

Cambria was born with only having three chambers of her heart, so the doctors literally had to make a wall to make a 4th chamber for her heart to work properly. The arteries inside her heart that come from her lungs and go to her body through her heart for circulation we’re twisted and on the wrong side of her heart. They had to cut them and put them where they belong.

Cambria also had an aortic arch that was shaped like an hourglass, to repair this they had to put a stent in it, while doing this her aorta was torn. The surgeon then had to put another stent below it to repair that tear.

A couple months later they had to go back in and do her second surgery because she still couldn’t get off the ventilator correctly. The Surgeon found that when they put her heart in during the first surgery it twisted and pinched one of the arteries to her lungs. So now she has, at the last lung scan a 30% blood flow to her right lung. To this day if you look at her chest you will notice her left side is bigger than her right side. Her left lung grew bigger to compensate for the loss of her right lung. Normally your left lung is smaller than your right lung because of the space that your heart takes up in that area.

Cambria recently had her third open heart surgery. This time to repair a leaky valve in one of the arteries that was cut and moved during her first surgery. Scar tissue grew too much and was spreading the artery. Causing the valve to flap, instead of opening and closing to push the blood from the bottom part of her heart to the top and out. Her blood was falling back down instead of all going out. Backing up what’s trying to come in, making her heart work harder to get it all out (high blood pressure). Then they had to replace her aortic arch where the 2 stents are.

Cambria’s pink tree

Cambria once again surprised everyone.  Two days after her surgery she was riding a tricycle around the halls at Boston Children’s Hospital. Only six days after having her surgery, Cambria was released. Just in time to celebrate Christmas at home with the rest of her family.

She has never been a typical patient, and everything has always revolved around her own schedule. Cambria will always have many complications. She continues to run around like a crazy child trying to keep up with big sister Selene and all the other kids and people with sunshine and rainbows every single day!!!

Selene & Cambria

She has exceeded the expectations of all her of her doctors for her recovery. They were all amazed and still are to this day of how well she has done since her last surgery.

Cambria like 20% to 30% of people with a CHD has other physical problems or developmental or cognitive disorders, she also has scoliosis, Chiari, bowel incontinence, U.T.I.’s constantly, speech delays, she stutters, and has some development delays…as she gets older her parents learn more about what she has and how to help her. She has multiple doctor appointments every month: Cardiology, Nephrologist (for blood pressure, kidney, and urinary), neurologist, orthopedic, specialist for speech. Cambria is also part of a study and therapy for her bowel incontinence. We now have added on physical therapy after surgery and mental health as she still has developmental delays.

This is Cambria, but she is the most caring, loving, funny, playful, silly, bright as sunshine child you would ever meet.

Cambria’s parents have given us permission to tell her story to help bring awareness to Congenital Heart Defects and to help all the other families with the same struggles. Cameron’s Crusaders is currently assisting Cambria’s family. Helping them be able to focus on taking care of their little girl while we, along with many other members of her community take care of the rest.

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