Maggie had a heart catheter procedure done to close the enlarged PDA (a hole) in her heart by small device. This procedure is commonly done, especially at Sunrise Children’s Hospital, where people travel from all over to have it done. The Cardiologist who performed the procedure was known to be very meticulous and skilled - many of the nurses were raving about him to me while Maggie was being wheeled to the OR.
This made me feel good and confident that all would go well, but of course a mother will always worry.
My day started at 4:45 AM so I could make it to the hospital in time to cuddle Maggie before her procedure at 7:30 AM and to sign consent forms. That cuddle time was very needed especially after the day Maggie had. She was very fussy at the time because they’d been making her fast since midnight, but she was content in my arms and with her binky. She was sucking on that binky as if it were a lifeline.
I sat in the waiting for about two hours before the Cardiologist came to retrieve me and assure me that the procedure was successful. I was ecstatic, relieved and very eager to see my baby. We met back inside the NICU where I got to see her.
She was extremely puffy from all of the IV fluids, and very out of it still from the anesthesia, but she was safe and well and that’s all that mattered. They told me it would be quite some time before she woke up so I was assuming it would be later that night.
They reinserted her NG tube (feeding tube) inside her nose which goes all the way down directly into the stomach. It’s best to receive an x-ray in order to ensure that the tube reached the stomach, or you run the risk of getting fluid in the lungs. So, an x-ray was performed and, as I was able to determine from a distance, everything looked alright.
I waited until she was stable and no longer fussed with - the nurses even told me it was best to leave her be so she could rest. So, I decided to leave and would return later that evening when I assumed she would be awake.
As I was driving away, and on the road for a good eight minutes, I get a phone call from the NICU. It’s Maggie’s doctor. She doesn’t tell me anything but puts the Cardiologist on the phone. They tell me that the device in Maggie’s heart had shifted. They were able to see it on the x-ray. At the time when I thought everything on the x-ray looked fine, the doctor was inspecting it closely to make sure it wasn’t a mistake before informing me.
My heart fell in my stomach. How could this have happened? They needed me to come back right away because the only way to take her back to the OR was for me to sign more consent forms again. I immediately turn around, and head back to the hospital. Luckily, I hadn’t been very far.
The doctor shows me the x-ray which, yes, confirms that the NG tube was in its proper place. But it also showed that the device in her heart was completely out of place. In fact, it had drifted down south and was blocking her pulmonary artery.
I spoke to the Cardiologist - he looked incredibly sorry and said as much. These things don’t normally happen. In fact, the odds of this happening are so low that it’s almost hard to believe that it actually did.
I asked him how this happened. He told me that even before they insert the device into the hole, it’s measured very closely through ultrasound. And even when the catheter is threaded through the vein, the device is placed inside the hole and made sure it fits perfectly before it’s even released. He had been very sure it would fit, but no one had anticipated that her PDA (the hole) was extra elastic - more so than normal - and was likely due to her genetic abnormality. She would need a larger sized device.
I wanted all the details before they took her away. How could he be sure this wouldn’t happen again? He told me they would try more than one size to make sure it's absolutely perfect and the lucky thing about this is a device can easily be taken back out if it's not yet released from the catheter, so they were able to try more than one size before releasing it.
So, Maggie is wheeled back to the OR, and I follow behind. My heart is breaking inside, and my anxiety is through the roof. Worst of all? She starts to wake up while she’s being wheeled back. I could see her little feet wiggling and her eyes opening.
Again, I watch her being laid on the OR table. Again, I quickly touch her toes before being escorted to the waiting room. Again, I wait in anticipation, but this time I am feeling much less confident.
A few more hours pass. The Cardiologist comes to get me. Everything went well. They retrieved the device that had fallen out and they tried two different sizes for the new one. The first was an extra-large but when it was inside the hole, it was sticking out too far into the aorta. So, they went with the medium sized one and it seemed to be just right. Though he looked just as anxious as I did. You can only be so confident given what happened with the first one and that it was so unexpected. He pointed to the ceiling and said, “it’s up to him at this point.”
Heart surgery would’ve had to be our final option, but I wanted to avoid that at all costs…
Maggie was taken back to the NICU, and I about fell to my knees when I saw her. She was as pale as paper. She had lost so much blood.
Her heart rate was at about 205 and they told me it was because her heart was working extra hard to make up for the blood loss. An immediate blood transfusion was ordered, but my gosh it took forever to come through. The doctor gave her 30 ccs by IV. The color started to come back into her lips, but she was still pretty pale.
She was given morphine for her pain. Ativan for discomfort. An X-ray was performed, and the device was still in place *hallelujah*
An echocardiogram was performed a few hours later just to be extra sure and it was still in the right place. She even received another one the next morning and the device never shifted. This was all fantastic news.
Much later that night Maggie experienced a de-sat episode that the doctor described as “clamping down” where her actual chest suddenly stopped moving despite receiving oxygen from the ventilator. The doctor had to “bag her” meaning they gave her quick, immediate oxygen in order to bring her back. We weren’t at the hospital at the time but receiving that phone call made us feel incredibly scared for our baby. We barely slept a wink that night.
*I later found out that if we had requested to come in right then, they would've let us. I didn't even know we were allowed (stupid COVID). I wish I had known this - I would've been there in a heartbeat.*
The next day she received an EEG to check for seizure activity because that’s what the doctor believed caused the clamping down episode.
Maggie is currently doing a lot better. She was very agitated for some time and fluctuated on the ventilator for about a day, but she is slowly being weaned from it and starting to breathe on her own again. The moment she’s off the ventilator we’ll be able to hold her again.
The last procedure Maggie needs before going home is for a g-tube (feeding tube). Thankfully the procedure is rather quick and easy, and we’re praying Maggie does well during this and during recovery. We are so excited to have our little girl home.
Everyone is born with a “PDA” it’s just supposed to close shortly after birth. Maggie’s never closed, and it’s allowing un-oxygenated blood to circulate through her body.
Here is a specific image that shows how the device is placed and what it looks like. Maggie’s first device that failed to fit was 4x4 ml. The device that’s currently inside her heart now and that was the right fit is 5x5 ml. The device is circular shaped and flexible - it expands once its inside the “hole” and acts as a plug. The catheter was inserted through the top of the thigh - or the groin - and through the vein like a thread.
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