You may have just heard those terrible words: “There is something wrong with your baby’s heart.”
You may not have answers yet. You may feel stuck in limbo. You may be wondering if they have made a mistake.
Mama, I hope they have.
I have been here. I have heard those words. I have felt what you might feel. I have googled all those things, too.
I am here to tell you, you will get through. There are going to be hard times. You might do things you don’t want to do, and you might see things you don’t want to see.
But, you and your precious baby will get through.
There might be a range of emotions that you will feel with this news. How long you go through each stage is personal. If you found out during pregnancy, I’m sorry, this might feel like an eternity. If you found out after your sweet baby was born, you might go through each phase swiftly, because your baby needs you to.
The first step: mourning. Yes, your baby is still living. You will not mourn the loss of your baby’s life, but instead you might mourn the life you imagined for them. Because, mama, the life laid out for them now is a little different.
You may have imagined them running and playing with friends. Playing sports and being a “normal” kid. Now, you are unsure if they will be able to do these things.
Will my baby be healthy enough? Will they have restrictions keeping them from being a “normal” kid? Will they spend most of their days in the hospital?
You might be asking these questions. I did, too.
Specialists, testing, hospital stays, procedures and maybe even surgeries are in their future now. They may be on lifelong medications. They may require tube feedings, or oxygen or physical therapy.
This is not what you imagined for them.
I know it makes you grieve for the life they were “supposed” to have. You wanted them to be carefree, like any other kid. Will they still be able to?
You might also mourn your own experience as a new mom.
The birth of your baby will be different. It won’t be a peaceful, exciting event anymore. Going into labor will bring with it extra anxiety about what is to come. Your baby’s birth might even be planned out well in advance to prevent any surprises.
When the day comes, there will be doctors and nurses everywhere, everyone on high alert, wearing sterile gowns, with an incubator ready. Or maybe, if your baby was diagnosed at birth, your excitement and peacefulness quickly went away after you realized something wasn’t right.
Your joy and excitement may be cut short by the nurses swiftly taking your baby for evaluations or treatment.
It is not what you imagined.
You won’t just have normal mama worries now. You won’t just worry about teething and sleeping.
Instead, you might worry about whether your baby is gaining enough weight, or if their oxygen levels are dropping, or if they are sweating while they are eating.
You won’t just be casually tracking their milestones anymore. You might be eagerly awaiting them, knowing they may come later, and that your baby might need extra help to reach them.
You might imagine everything differently now. It might be hard to see the good things that will come. It might be hard to see a “normal” life. All you might see are the wires, and tubes, and bandages and scars. It can be hard to see past it and imagine a happy life.
Before you have all the answers, and before you have a treatment plan in place, you might not know what to expect. And that, mama, can be the absolute worst part.
And when you do have these answers, you won’t know if your baby will handle these things well. You won’t know if there will be complications. You won’t know if they’ll survive.
And, mama, I know I am not giving you anything new to think about here. Because as a new heart mom, I imagine you have googled, researched, asked a million questions and thought out every scenario in your head. Because you might be like me.
And I had fears just like you. Waiting for what happens next. Wondering if everything is going to be OK.
And, mama, chances are, everything will be OK.
The first year of your baby’s life can be the hardest. Because, well, it is for any baby. But for your heart baby, they have extra needs that can add to the stress. You are in the midst of extra doctor visits, testing, echos and regular weight and oxygen checks.
You might even be preparing for a procedure or open-heart surgery.
At this point, things might be sinking in. You might be going through the motions. You do what you have to do to get through each day.
You are now in survival mode.
You are strong for your baby, and for your other children, if you have them. You may put all of your energy into making sure you are on top of all of the needs of others.
People might tell you that you’re so strong, and how amazing your are for doing what you do for your child. For going through what you do as a mother. But, you don’t think twice. You are doing what comes naturally as a heart mom.
But, mama, you are seriously strong.
Now, you have embraced this life. The medications have become a daily routine. The doctors and nurses have become your friends. You even send them Christmas cards.
You now talk about your baby’s heart without bursting into tears.
You have accepted this life as your new normal. It no longer feels foreign to you, and you now feel like you have a handle on things. You no longer feel in a haze.
You also know by now there is so much that doctors can do for you child. You have hope that your child will lead an amazing, fulfilling life. And that, even if they have some restrictions, or their endurance is a little lower than others, they can still do things they love. They can thrive and be happy.
You have now realized that, even though it is not the life you dreamed of, it is still a great life. And so worth every tear and hour of missed sleep.
You might also be grateful for all you have learned along the way. For the people you have met, and the ways your child changes you. Your heart baby will make you a better person.
This is the time in your adventure as a heart mom when you can begin to live your life.
Mama, I know you did not choose this. You did not want this life for your baby. Or for you.
This is not the life I chose either.
But, my baby has thrived through two cardiac caths and two open-heart surgeries. He had some complications in his first surgery, but he made it through. He is now an energetic, smart, almost 4-year-old, who attends preschool. He is silly, has the best belly laugh I have ever heard and shows empathy like I’ve never seen in any other 3-year old.
We lived through all of this, and now here we are. Living a semi “normal” life. We had a third child. We went to the beach this summer. We sold our house and are building a new one. All things I never imagined being able to do when we first learned of Adam’s diagnosis. I thought any kind of “normal” life was out of reach. Surgeries and hospitals were all I could see.
But now you know. With a few modifications, you can find your “normal.”
And a few more things
You are strong. You are capable. You are a heart mom. You’ve got this.
Follow this journey at Mama Doing it All.
Natalie Schroeder Follow
Natalie is the mother of three beautiful little people, one of whom has a severe congenital heart defect. She blogs about all things motherhood and the added challenge of having a child with a medical