Laura was born a healthy baby girl weighing 9lbs, 12 ounces and measuring in at 21.5 inches long. Because she was such a large baby, the nursing staff at RUH in Saskatoon decided to test her blood sugar levels which turned out to be quite low. She was given formula but her blood sugar would not rise. Laura was sent to the NICU where it was discovered that she had both a heart murmur and oxygen saturations of 60.
At less than half a day old, Laura was diagnosed with a Congenital Heart Defect called Transposition of the Great Arteries (TGA). Her aorta and pulmonary artery were in the wrong places and she would require immediate open heart surgery in Edmonton, Alberta at the Stollery Children’s Hospital. At 2 days old we were airlifted to Edmonton and by her 5th day of life she was headed to the OR for the first time. Laura’s surgery was a success and after a few days, her sternum was closed and she was extubated. Due to a surgical complication, Laura’s left lung collapsed because her diaphragm became paralyzed. This kept us in the NICU in Edmonton even though she was doing very well otherwise – we are forever grateful and thankful that we were kept in Edmonton.
9 days after Laura’s surgery, at 2 weeks old, Laura went into Sudden Cardiac Arrest.
She required 90 minutes of CPR while her heart was not beating on its own. She was placed on ECMO life support and over the course of the next 5 days she underwent 2 more Open Heart Surgeries and multiple surgical procedures. The problem had been with her coronary arteries which had closed off preventing blood from entering her left ventricle. Thankfully, after this time she began to improve and we were able to see her beautiful smile for the first time at 1 month old.
2 weeks after Laura’s improvements began, an echocardiogram showed severely diminished function in her left ventricle. Dr. Pockett from Saskatoon’s Pediatric Cardiology department was called in to do an emergency cardiac catheterization which showed that Laura’s left ventricle was barely functioning and her coronary arteries had begun narrowing again. We decided on another surgery which brought with it a 25% risk of mortality. It was a big risk and it was a terribly difficult decision, but it was the only way to save Laura’s heart. After that surgery, her 4th Open Heart, she returned on a Left Ventricular Assist Device (LVAD) to help support her left ventricle as she healed.
She did well enough to be taken off the mechanical heart (LVAD) and after a surgery on her diaphragm, she was extubated and breathing on her own for the first time in months. At just over two months old, Laura was well enough to be transferred out of the PCICU (Pediatric Cardiac Intensive Care Unit) to the step-down unit.
We were transferred to the ward but after 4 hours in our new home, Laura again went into Sudden Cardiac Arrest – this time in front of us.
She required 7 minutes of CPR, multiple shocks with the defibrillator and a couple of doses of epinephrine before coming back to us. She was transferred back to the PCICU but on the way, she went into her 3rd Cardiac Arrest Episode- this time lasting 30 minutes before she was placed on ECMO again.
At this point, once we determined that Laura’s neurological status was still intact, she was assessed and placed on the Heart Transplant list as her left ventricle was no longer able to support her small body. After 4 days on ECMO, she was placed on a special LVAD called the Berlin Heart. She remained on this mechanical heart which laid outside her body for 54 days while she waited for her new heart to arrive.
Just before her 4 month birthday, Laura received her new heart and it was perfect. 5 weeks after her transplant, Laura was able to come home for the first time in her life. In the first 5.5 months of Laura’s life she endured 6 open heart surgeries, 2 surgeries on her diaphragm and 17 other surgical procedures. She had been through so much but none of seemed to matter the second we saw our baby girl in our home.
Laura is now 18 months old and she is thriving.
Laura is a big girl, coming in at the 85th percentile for both height and weight and she is at the proper developmental age in terms of her physical development. Cognitively, Laura is coming in at above average even though she missed out on so much of her early development. Laura is happy, funny and always excited to meet new children. She faces a lifetime of immune-suppression medications which leave her at risk of illness and disease but we are thankful every day that we are able to face our challenges with her by our side. Laura’s scars remind us of the big battles that she has faced and we are proud of all that she has been able to accomplish so far and all that she will accomplish in the future!