“If she makes it, she’ll probably need a new heart.” As I looked at my cooing little 2-month-old girl, Brooke, I could not wrap my brain around what the cardiologist had just said.
She had a serious, rare heart disease called dilated cardiomyopathy. Brooke had been fussy and spitting up for the past 2 weeks, but she had been so healthy leading up to that point.
At her two-month check up, her pediatrician thought he heard something “funky” when he listened to her heart and had sent us to a pediatric cardiologist, “just to be safe”. June 17, 2009, was the day that forever changed who I am as a mother and as a woman.
After two weeks in the PICU, our sweet Brooke was able to come home on a myriad of medications. Brooke thrived at home. She hit all her developmental milestones and forged an unbreakable bond with her protective big brother, Billy. However, after two years at home, her heart could not continue the fight and she was listed for a heart transplant.
Living with her heart disease, major hospitalizations, and now being a transplant recipient, I have learned many life lessons for surviving as a mother of a chronically sick child.
1. Let others help
When Brooke was an infant in the PICU, I had girlfriends come to visit and provide support. After they had left, a nurse pointed out that as much as I was hurting, my friends were hurting too, and that I should allow them to help in any way possible. Two years later, when we were living for 75 days in an ICU, awaiting a new heart, I remembered that nurse’s advice and swallowed my pride and asked for some help. As it turned out, most of our friends were feeling helpless and didn’t know what to do. A girlfriend registered for a website that organized care for us. People could sign up to bring dinners, to visit and provide me some relief at the hospital, and we arranged play dates for our son, to keep him busy and happy. It was very humbling to need and accept help, but it kept us sane and there is no question that we will pay it forward to other families someday.
2. You are your child’s number one advocate
When doctors enter the room with their fancy white coats, there is an implied authority, but ultimately you have rights as parents to decide what is best for your child. I did not go to medical school and do not have the expertise to make major medical decisions. However, I make it a point to be educated and informed regarding all Brooke’s medical care. I ask the doctors for print outs of all medications she is given. I want to know why the medications are being prescribed and possible side effects to look out for. When in the hospital, I always participate in the doctor’s daily rounds. I want to hear what their plan is for the day. I will often ask for clarification when they are speaking in medical jargon that I cannot follow. I rarely challenge decisions, but when I do, I am sure to communicate my reasoning.
3. Take care of yourself
My pitcher needs to be diligently and lovingly filled, so that I have something to pour into my family’s cups. I try to take time for my own activities, like reading, yoga, or a manicure with girlfriends. Living the life of a medical momma requires the endurance of a marathon runner, without the cheering sections. We need to create our own celebrations.
Brooke is now 5 months post transplant, and except for a couple hospitalizations due to immune deficiencies, she is doing phenomenally well. Without seeing her scar, that is already fading away, or her 12 medications, one would never suspect all that she’s been through in her short 2 ½ years.
She is a true miracle and we are forever indebted to her donor family. We are beyond grateful that in the midst of their grief, they chose to save our family from experiencing the pain of losing a child. While in the hospital, we met several families that were not as fortunate as we were. Statistics show that 18 people die every day while waiting for an organ donation. Through much research, we learned that most Americans are in favor of organ donation, but do not know the proper steps to become registered.
To help the process, we created a website to promote organ donation awareness. People can register as organ donors in as little as 90 seconds. Please take the time to visit our website. Once registered, please be sure to speak to your family about your wishes.
Through you, someone like our precious Brooke can have a new beginning.