CHD Angels: Brooke’s Story

Brooke’s Story is the first in a series remembering the CHD Angels that lost their fight with Congenital Heart Defects, and the families who love them.

We found out that Brooke had a heart condition when I was roughly 6 months pregnant. We knew that it had to do with the right side of her heart, but not many other details. 

Fast forward a few months to when our cheeky little monkey was born, and we learned that she had a pulmonary atresia with intact ventricular septum (the valve that controls blood flow from the heart to the lungs doesn’t form at all, making it difficult for the blood to get to the lungs to be oxygenated), and narrow, practically non-existant coronary arteries.

Our beautiful baby was just two days old and we were faced with making an almost impossible decision between two options. We had to decide whether to do a high risk surgery (because of her coronary arteries) or wait for a heart transplant. Two days old and we are asked to risk our daughter’s life or wait for another angel to die so we could save our own.

It’s an understatement to say that this is decision that no parents ever wants to make, that no parent should HAVE to make, and certainly that no parent is equipped to make. They don’t cover any of this is your prenatal classes. But CHD doesn’t give you a choice. It makes you face your fears, as an adult, as a parent and as a human being.

Open Heart Surgery

July 1st was the first time I said goodbye to my baby, praying hoping with every part of my being that our baby would be coming back to us, healthier and happier after her Open Heart Surgery. Hours later, when she came out into the PICU, our surgeon said she was definitely a hard case but she fought in the surgery room. The next few days we walked on egg shells, but she survived, she healed up and our lives were looking easier. Then she decided to change and make the nurses and the doctors work.

After many scares she leveled out again and eventually we were moved out of intensive care and upstairs to the ward, which is a unique joy that you can not understand unless you’ve been there. A few weeks more and we were sent home!  After a month and a bit of being in the hospital we were relishing the opportunity to be a “normal family”. Aside from the weekly doctor visits and check ups, scans, tests etc ….. we were a “normal” family. We were happy, Brooke was happy, and that is all that mattered.

We were enjoying celebrating all the gains and milestones with every month that passed. Brooke was eating food, gaining weight, moving around, and keeping us on our toes in general. I loved every minute of it!

Heart Failure 

In December of 2014 we unexpectedly had to take Brooke into our local hospital with laboured breathing, greyish skin, and what looked like bruising around her eyes. I give kudos to our hospital staff, they must have been terrified! We were airlifted down to BC Children’s Hospital where it was determined that Brooke’s heart was in complete failure. It was actually sitting on her left lung which was collapsed, she had had two strokes, hemorrhages on her brain and an extremely enlarged liver. Once again we were faced with that decision, the decision that we may never see our daughter again.

After she was out on machines and we realized that a heart transplant would NOT be approved as now she has problems with not only her heart, but her brain, lungs and liver. Surgery was our only choice and it had to happen immediately. Once again we said goodbye to our baby, and again she came out, the doctors were amazed – we were amazed! She got better fighting hard with every breath and every heart beat. We had the scare of our life, and yet we now had our daughter back! After another two month stay and a bout with RSV we were discharged and on our way home.

Third Surgery

Life was awesome! We had a growing one year old, with the attitude of a teenager. Brooke had more sass, spunk and attitude then most people I know. In the blink of an eye, we reached the 14 month mark and we are scheduled for her 3rd and hopefully last surgery. The doctors, surgeons were all happy with were she was at, this was the first surgery we were comfortable with, a “planned” surgery. The days before the surgery are stuck in my head; the smiles, the laughter, the hugs. 11 hours was her surgery…… 11 long, excruciating hours, but she came through it ok.  As the days passed, however, her oxygen saturation levels started to decrease and we could not understand why.

September 4 the doctors decided to perform a catheterization to try and figure out what was going on in her heart. I remember walking passed the cath lab after getting some lunch and seeing a nurse come running out for the crash cart. At that moment I just knew, and the nurse yelled something at me as she ran passed. 5 minutes later she comes out to the hallway, to explain that Brooke went into Cardiac Arrest and that she was out for 18 minutes, which for a typical baby could be OK, but because Brooke had oxygen saturation levels in the 20’s, she had no reserve of oxygen.

Life Support

September 4th, 2015 – my baby, my Brooke, my world left her body. Her body was still barely holding on, but her mind and soul were gone, You could tell, over the next 5 days as she was on and off ECMO , and she crashed on us two more times. Her brain was swelling and they couldn’t make it stop. She was seizing every couple minutes and there was no improvement at all. We tried our best to be positive, to pray that she would be coming back to us.

It’s important to know that Brooke took no directions from anyone. When she wanted something, she got it. A 1 month old, she didn’t want her feeding tube in anymore so she yanked it out, and started holding the bottle. She was strong – a force to be reckoned with, so we kept hoping for a miracle. On September 8th, I told her that I would not be mad if she left us, that I knew that she needed to go and that deep down that was what needed to happen. On September 8th, I said goodbye to my baby for the last time. No mother ever wants to see their child die, but somehow I felt that day that she was ready to be free, that she had fought as hard as she could and that we needed to stop the pain for her.

Brooke Alethia Marie left us on September 8th, 2015 at 2:08 pm.

The hurt that I have everyday is excruciating. Every day I have to deal with deal with the emptiness, deal with the loneliness. But I would never in a million years give up what I had if I knew it would end the same way. That little girl showed me what life was really about, how to love and how to love strong, and how to believe in myself. That girl brought more people together than most do in their lifetime.

Everyday something will trigger me to think about her, something will remind me of her, and that’s OK because I don’t ever want to forget her. It scares me, that one day I will wake up and forget the memories and the life I shared with her….. One never thinks that you could be the 1 in 100, but we were and I feel that even though we lost our fight, we have learned so much.

Our angels are placed on this earth, in our lives for a short, but amazing time. I would give anything to hold my daughter one more time, to tickle her, to hear her yelling ‘uuuck’ in protest… but that is all it is is a wish. Congenital Heart Defects are a horrible disease but we’re making improvements every day! Don’t be like me – learn, understand , spread awareness. It may not happen to you, but it may happen to your sibling, your cousin or your friend. Let’s talk more, ask questions and become more knowledgeable.

And for me, one favor I ask, is to hug your love ones, to forgive them, to spend that extra time because tomorrow isn’t always going to be there for us, we need to live in today!

Brooke Alethia Marie.  June 28, 2014 to September 8, 2015
Though she be but little, she is fierce – Shakespeare