God's Plan for my Daughter: A Congenital Heart Defect | Metro Detroit Family Documentary Photographer

Shortly after becoming a mother, my newborn daughter was diagnosed with a congenital heart defect. I reacted in a way that I'm sure many mothers would: I embraced her as if my hug would heal her, I felt guilt and wondered if somehow I had caused this to happen to her, and initially, I was afraid for how this could affect her. 

If you would've told me then that almost four years later I would be at complete peace in a waiting room, while she lay under anesthesia in a cath lab while her heart was repaired, I wouldn't have believed you. 

But that's how the story went.


At just two weeks old, my daughter's pediatrician detected a heart murmur and we were sent to a German doctor for further evaluation (we were stationed in Germany at this time). After the initial EKG and echocardiogram, we were told that she had holes in her heart and that the duct between her pulmonary artery and aorta wasn't yet closed. The doctor explained that sometimes these holes don't close up in utero, but that they would close soon. We were asked to return for follow-up echocardiograms annually to check the progress. 

It was at her third annual follow-up that I began to feel quite unsettled with this. Sure, I trusted this doctor with my child. I had watched how thoroughly he performed the echo, and I had researched everything he said. But something (ahem!--God) was telling me that I needed to request another doctor's opinion.

Praise God that I did.

Just before we moved back to the USA from Germany, we drove a couple of hours away to see another doctor. He told us that the holes had closed, but the duct was still open and that it should have closed on its own already. He explained that it would need to be repaired in a cath lab, and urged us to have the procedure done as soon as we could. Despite that sense of urgency, we had answers and a plan for our oldest daughter, and after being in limbo for what felt like forever, I felt peace.


Right after moving back to the states, we met the pediatric cardiologist who would perform the procedure. I left the appointment in tears, knowing that he would be such a blessing to our family. As we drove away from the hospital, I only had one small worry:

How would I explain what was going to happen to our daughter? She wasn't even four yet.

So I prayed. I didn't have the wisdom for this, but God did.

Soon after she asked me, "Mama, what's wrong with my heart? What's in there?"

I replied, "Jesus!"

"I know, Mama, but why do I have to go to the hospital for my heart?"

After a deep breath and a quick prayer for guidance, I explained, "Girl, there is nothing wrong with your heart. It is just working a little too hard right now pumping blood. So the doctor is going to make it work less on the blood pumping, so it can work harder at giving even more love to everyone around you than you already do."

She thought for a minute, and then reminded me that Jesus was indeed in her heart and that's why she knows how to love, and that she was excited to have "a sleepover with Mama at the hospital."

As crazy as this sounds, that's pretty much how I viewed this hospital stay also. The peace that overcame me in the pediatric cardiologist's office hadn't left.

I knew that she was going to be okay. I knew that God had plans for her and her big, sweet heart. And I knew that in order for her to continue feeling that this was not scary, I needed to maintain that faith outwardly.


When the morning of her procedure arrived, she awoke ecstatic for this "special breakfast" of apple juice (per the anesthesiologist's orders of no real food after midnight the night prior). We set off for the hospital, praying that her excitement would not fade nor turn into worry. 

It didn't. While toting around our suitcase, getting her hospital bracelet, showing off her "Hangar shirt" to the hospital staff, and riding to the cath lab on the hospital bed, she seemed to have fun. I remember closing my eyes and being so grateful that it had taken four years for us to be in this place, about to have this procedure...because without all of those EKGs, echocardiograms, and interactions with her "heart doctors," this could have been an extremely scary experience for her.

As usual, we were experiencing God's perfect timing.

 Girl waiting room children's hospital heart procedure
 Walking to surgery prep children's hospital
 Girl wheeled to cath lab for congenital heart defect repair
 Cath lab entrance at children's hospital

I was not permitted to photograph anything past the door pictured above. 

And I wouldn't have wanted to. In the moments before she fell asleep, I held my daughter's hand and told her that I would see her after her nap. Once she was asleep, we kissed her and left the area until the procedure was over.


We walked the hospital grounds and grabbed something to eat. Knowing my husband was nervous, I tried making conversation with him.

He looked at me, perplexed, and asked:

"How can you be so calm about all of this? How are you not afraid?" 

 

I paused, and recounted a conversation I had recently overheard that had served as such a blessing to me.

Soon after we had met her cardiologist, I was watching a Joyce Meyer stream. She brought people in to discuss major life obstacles they had faced. A man that had a daughter with a lifelong health issue came on and began to speak about it. He said that he had initially felt so upset by her medical issues--he blamed himself for her issue, wondered where he went wrong, he felt helpless, etc.

I identified with all of those things back when my daughter was a newborn. I thought I had done something wrong during my pregnancy with her to cause these holes to remain open. I wanted to make all of this go away. I felt like I could do nothing for her. 

This man seemed to be reading my mind.

For as long as I will live, I will never forget what he shared after that:

He grew to view her medical issue as a blessing. 

 

Most all of us would say that our children are blessings. I think we'd also agree that none of them ask to have medical challenges (nor do we wish for that to be the case). A lot of the time, they're simply born with them. It's an unfortunate part of life, but nonetheless is a part of life. 

The beautiful thing about being a parent to our specific children, which this man reminded me of, is this:

God chooses us specifically for our children, and our children specifically for us.

So not only did God trust this man to be a father, but He also entrusted him with a daughter who had challenges that required extra care, extra attention, extra love, extra patience. This little girl had the exact father that God knew she needed. He explained that he was overwhelmed with emotion upon realizing what an honor it was to be trusted by God with such a delicate thing as a child, but especially one that needed extra special love and care. 

Our God, who created everything and cares for billions of people every second trusted him! 

As I folded laundry that day and listened to this man pour his heart out, I realized that everything he said (aside from the differences in medical issues in our daughters) applied to my husband and myself. And if God trusted me to do right by my daughter, I wasn't about to let Him down.

Our conversation ended just as we finished eating, so we perused the gift shop, purchased a balloon for our daughter, and headed to the Family Center to wait.


Almost immediately after I photographed my husband admiring the balloon he bought, our daughter's cardiologist walked into the family waiting area and told us they were finished with the procedure. We followed him to the cath lab, where he showed us photos of what they had done and explained that everything went flawlessly. 

From there, it was off to the observation ward, to wait for her to awaken.

 Observation unit at children's hospital
 Girl asleep after congenital heart defect repair procedure
 Mom holds daughter's hand after congenital heart defect repair procedure

The nurse expected her to stay asleep for a few hours because of the anesthesia. (I smiled when she shared this, because I knew this wasn't going to be the case).

Within a few minutes she woke up (see?! lol), and reality seemed to hit her that something had happened to her...something greater than what she had realized.

The questions flooded in: "What is this on my hand? Can we take it off? I want to take it off! What is this phone? What are these cords for? Is my heart all better?"

This question was my favorite one, and is complete and utter proof that she is, indeed, my daughter:

"When can I eat?!"

 Girl plays with EKG monitor after heart procedure

We worked through her concerns, answering questions as they came up and continuing to normalize this for her. Because frankly, this was her normal. Although antsy, after a little while she seemed to accept her circumstances.

Then, the sleepover fun began.

In the midst of our sticker and coloring book shenanigans came some monitoring, an echocardiogram, and plenty of bathroom trips before we settled down to try to get some rest.

 Girl walks in observation unit after PDA repair procedure

Soon enough, morning came and the other half of our tribe arrived to take us home.

 Dad and daughter bring flowers to daughter in hospital

After these photos, I put my camera away for the discharge. (Normally I am very concerned about finishing the story I'm telling in a session, but I wanted to be present during that time). As we walked out of Observation, through the halls, and out to the parking garage, I was pouring out gratitude to God. Gratitude for a successful procedure; for the peace He wrapped all of us in; for the staff at the hospital; and for the simple fact that she had just a PDA and nothing more serious.

And as I took this photo, I was overwhelmed with gratitude for this girl and everything that she is.

The way she weathered this entire situation--her acceptance of it, the bravery she exhibited, the lack of worry and fear, and the way she recognized the positives every step of the way (because how cool is a stuffed panda from your doctor and a sleepover at the hospital with just your mom?!)--will always serve as an example of what to strive to be in the midst of misfortune. Because really, there is no better way to be than faith-filled.

 Little sister looks at big sister while family waits for car

I wanted to document this experience and share this story because I know the feelings of worry, anxiety, and fear all too well. Whether you have a child with a medical issue, a medical issue yourself, or are experiencing something else that is causing you to feel those emotions, my hope is that by reading this you may be encouraged. I pray that you find peace in whatever you're facing, and that you know that there is a plan for you, too...a beautiful plan.

 

-Amanda