Lea Debbie Carmichael

Lea Debbie Carmichael was born in Collingwood, Ontario on July 4th, 2011 at 2:34 p.m. Weighing 5 lbs., 13 oz. The room was quiet despite the presence of family and friends. We had no idea the severity of the situation but the silence was worrisome. Our baby was not breathing and had ingested meconium. Her left lung collapsed and she was immediately revived and intubated. A team of professionals were dispatched from Sick Kids Hospital in Toronto to come get her.

Upon arriving at Sick Kids, it was explained to us that Lea has a CHD (congenital heart defect). Her diagnosis was called Tetralogy of Fallot with an absent pulmonary valve. Lea spent 23 days in hospital before she was stable and ready to go home to await surgery.

We spent five wonderful months at home caring for her. It felt normal despite some of the challenges. Lea was so small and unable to gain much weight. At six months of age, when Lea was admitted for surgery on January 9, 2012, she was only ten pounds.

Lea's heart repair went well. The anticipated recovery time for the open heart surgery was about 10-12 days but Lea would soon experience complications with her airway. Lea would undergo three open heart surgeries in little over a month. By March, three months into her hospitalization, Lea would become increasingly unstable. Her heart pressures were increasing and she continued to have difficulties breathing. A CT scan showed a compression of her left Bronchus so she had been placed on very high pressure settings on the ventilator, breathing machine, to keep the airway open. This would lead to several other complications and challenges.

Lea spent several weeks sedated and on the ventilator before the doctors would decide to operate. The middle lobe of her right lung was removed in order to provide room for her expanding heart muscle. Lea would find some relief and was regaining strength. She would spend the next month trying to have the pressures brought down on the ventilator. Unfortunately the pressures needed to keep her airway open were still very high and Lea would need a fifth operation for a tracheostomy. She would first require a feeding tube as it would be too dangerous for her to learn to eat by mouth with the trach and ventilator.

As parents, we had gone through months of training in order to care for her at home safely. We would learn CPR and how to use all the respiratory equipment. We became completely hands on in the hospital in order to prepare for Lea to come home. We had also decided, knowing that Lea was going to have a somewhat limited lifestyle that it would be amazing for her to have a companion, a sibling to grow with. We were due to have our second child in December.

We celebrated Lea's first birthday in July at Sick Kids and we knew it wouldn't be long before Lea would come home. Lea was scheduled for a cardiac catheterization just days after her birthday. This was a procedure that would provide imaging and understanding of Lea's heart pressures. The procedure went well. They managed to reduce her pressures slightly by dilating some of the vessels from heart to lungs but the news we received that day was any parents’ worst nightmare. It was explained to us that Lea's heart and lungs were never going to get better, that we should enjoy our time because there was little that can be done and that her condition was progressive. It was only going to worsen in time. The option for transplant was of little significance as Lea would need both heart and lungs. It was beyond devastating.

All and all, Lea would spend eight months at Sick Kids. She would have five major operations, at least a half dozen surgical procedures, several blood transfusions; she would be resuscitated and revived at least four times. Despite all of that, Lea would smile any chance she could. On August 8, 2012 Lea went home.

Hospital life and home life were an entirely different experience. Lea was on a ventilator for most of the time with small 1-3 hour breaks off the breathing machine, as long as she was strong and did not show signs of stress or work of breathing. She enjoyed her freedom but sadly, wouldn't want much to do with anyone. She wouldn't look at anyone in the eyes. We felt like her thoughts were that if she didn't look at you, maybe you would go away, that you wouldn't have to suction her, or hook her up to the feeding pump or change the dressing on her feeding tube. It was very hard to develop trust and a relationship with Lea.

Lea was getting stronger and stronger over time. She was able to take longer periods off the ventilator to eventually only needing it at night. She worked with the therapists on her development and surprised many with how much she would accomplish on her own will. More importantly, Lea was finally starting to show signs of affection and trust.

Lea was set in her ways and we took most of our cues to change things regarding Lea's care, from her. We would try to hook her up to her ventilator at night and she would pull it off her trach over and over. We decided to monitor Lea closely while she slept without the ventilator to see how she would fair. She was always hooked up to a heart rate/oxygen saturation monitor and night after night she would remain comfortable and stable without the ventilator.

Lea had her trach for a year and understanding Lea's diagnosis and seeing her will to breathe, we decided to consult with her medical team at Sick Kids about the possibility of having her trach removed. It wasn't an easy decision for all the medical team and far from what they are so used to, prolong and preserve life. Our thoughts, since understanding Lea’s condition, were to offer her quality of life. On May 29, 2013, Lea was admitted in to the Cardiac Critical Care Unit at Sick Kids for a supervised decanulation with 48 hr. observation. Although it took Lea 24 hours to really become comfortable with breathing on her own from her mouth and nose, she did amazing and required no medical assistance.

Everything was truly amazing at that point. Lea was growing, developing and more importantly, she was happy. Marcus was almost six months old already and we were about to celebrate Lea's third birthday. We had follow up appointments at Sick Kids since her decanulation and they were pleased to see how well she was doing. We were considering moving back out to British Columbia in October so a discharge appointment was booked at Sick Kids in September.

When we arrived at Sick Kids, September of 2013 they had done some tests. Lea was considered to be in heart failure and was immediately scheduled and admitted for an emergency cardiac catheterization. There was little gain from the procedure. The pressures were not reduced and a stent was put in place where a vessel had been damaged. The worst was yet to come. Lea would once again struggle to breathe on her own. She was place on the ventilator and not expected to pull through. I remember sitting in the room with her cardiologist who I truly respect but would have hated to have his job in such circumstance. The odds were not good but there was hope. Lea was extubated. She had a will to live. From that day forward, any time we have gained with Lea was truly a gift.

Needless to say, British Columbia was out of the question. Lea would continue to work on her development and Marcus was pushing her to reach new heights. She had made some serious gain in such a short amount of time. Within just a few months of her close call, she had learned to finally walk and truly loved her independence.

Once again, it was time to consider moving back to British Columbia. My funeral director’s license was going to laps and it was too late to consider certification in Ontario. I had been off work for 3 years and there's nowhere else that I would have rather of been for those years than with my children, loving them, watching them grow and meet milestones. Lea was stronger than ever and Marcus was ready to take on the world. So down to Sick Kids we went for a hopeful discharge/transfer of care appointment. No surprises, just what I suspected, Lea was ready. There had been no significant deterioration of her heart since her last procedure almost a year ago, her blood work was phenomenal aside from low sodium which was easy enough to rectify. We were given the green light and off we went.

My trip across country with Lea was a journey I will cherish and remember always. She was so happy. She laughed in her car seat, watching her familiar DVDs (Doodlebops cartoon, Baby Einstein: Numbers, Cars or Winnie the Pooh). We stopped in White River, ON, home of Winnie the Pooh. We stayed a few days in Saskatoon to visit with family and we made it, safe and sound to Vancouver.

Lea has taught me so much despite her short stay; Perseverance, determination, selflessness, patience, acceptance, forgiveness and love. Lea has molded me into the person I am today. She was pure strength although we know she struggled every day. She lived with so much discomfort and yet she treated her pain with joy. She embraced life with a smile.

Lea's final days were no different than we were used to. She had moments where she seemed uncomfortable and tired yet happy, vibrant and playful until the late hours in the evening. We had gone for a long walk to look at the Christmas lights. She had been struggling with a mucous plug and I would give her saline treatments and she would find relief. On December 22, Lea was rushed to children's hospital due to a likely aspiration. She did not fight or resist treatments as she had always done which was very alarming. We were hanging on to hope as we had witnessed Lea pull through from far worse but things became very evident when I was made aware of how high the pressure support was to assist her breathing. Maybe it was coincidence but the following evening, the doctor that took over in the ICU just happened to be one of the doctors who worked in the critical care unit at Toronto sick kids during Lea's 8 month hospitalization. He knew Lea and her medical history and our conversation was simple and undeniably painful. Before we had a chance to process the difficult decision we were faced with, Lea had made it for us. Her heart, too big for this world, would stop. I held her in my arms, selfishly begging for more time. She was gone. Lea died at 1:13 a.m. On December 24, 2011...to join the Angels, to sing, play and be at peace.