Where the raindrops as they're falling tell a story...

Sunday, May 10, 2009

Our Journey on Transcath ASD Closure

Dr. Kelly, a blessing in the guise of toxic goiter
Dr. Raquel "Kelly" Pasimio introduced us to Amplatzer. Before we met her, all I could ever think of was how I could let my daughter undergo open heart surgery. I was frustrated. I had no other option. My only hope was that the surgery would not be needed until she's older.

About the same time we learned of Xofia's congenital heart anomaly, my husband had to take medication because of his toxic goiter. He casually mentioned our situation to his doctor, Dr. Marsha Tolentino. Dr. Marsha told him about how Dr. Kelly is working with a team of doctors in Manila doing transcath closure of heart defects. We met Dr. Kelly a month thereafter. She's not just a ray of hope, she bonded with Xofia instantly. We had no doubts. We wanna see this non-surgery ASD closure to the end.

Questions
On Xofia's next transthoracic echocardiogram (2d-echo), the hole very slightly increased according to the reading, but the local pedia-cardio advised surgery before she turns two. Isn't that a bit drastic? The hole is not even bigger by a size. Emotionally, I was back to square one. Why is the hole not closing up? How can Xofia has this when she's a perfectly healthy, happy baby?

Sometimes when your current doctor cannot answer all your questions, you look for answers from somebody else. It's tiring to be asking the same question to the same person and be getting the same answer that never satisfies you.

We sent the 2d-echo results to Dr. Kelly. Because of her being based in Manila, we're only able to catch her every once in awhile when she's in Cebu---and while in a vacation at that! I couldn't believe the heart of this petite doctor, how she accommodated, guided and helped us through.

Through a letter, she let us know that Xofia is certainly needing an intervention, but a surgery this early isn't necessary. This opinion was based on the two readings by our local pedia-cardio obviously stating that there is no dramatic increase in numbers. This opinion was being collaborated by Dr. Charles Cuaso and Dr. Jonas del Rosario, both interventional pedia-cardio experts. But if we wanted a real opinion from her and from Dr. Cuaso, we'd have to fly to Manila for a transthoracic echocardiogram done by her.

Higher numbers
Six months later, which was last week, we were in Chinese Gen doing a very intensive echo on Xofia. Dr. Kelly was reading higher numbers! The hole has gone bigger. From the previous reading's 6.5-7, it is now in 12-13! The inferior rim has also gone dangerously small, 6-7.5mm. If the rim is any smaller than 6, we wouldn't have a chance on transcath closure. Dr. Kelly told us that if we wanted the transcath, the procedure has to be done ASAP. Even so, Xofia's was a 50-50 case. There's a big possibility that she's not viable for the Amplatzer implant, this Dr. Cuaso explained. The rims around the hole has to be enough for the device to latch on to. Xofia's inferior rim was borderline.

We made it clear to Dr. Cuaso how we wanted the procedure, and that surgery is the last thing that we'd entertain. And we wanted the procedure done ASAP, no time to wait. Since only St. Luke's has the small TEE probe that can be used for Xofia, the procedure has to be done in St. Luke's. We didn't mind the least. It's the best hospital in this country, and we have the best team of doctors attending to Xofia. Dr. Cuaso made some calls, and had it not been a legal holiday (May 1) and banks were open, we would have done it right away. We then scheduled for the transcath ASD closure on May 7.

The longest 3 hours
Now Xofia has a memory like that of an elephant, and she hates hospitals. She was OK when we were at the concierge, but the moment we stepped into the room, the mood has changed. She wouldn't even sit on the bed! We had to place the IV on her and draw some blood. Everytime she's poked by nurses, she'd look at me almost telling me how her mommy can let something like this happen to her. I kept telling her I was sorry and that everything will be over soon. She did not take that lightly. As soon as her hands were free, she'd hit me with such passion I didn't know a baby's slap could hurt like that!

I accompanied her on the cath lab. She needed to be with me before she goes under. The anesthesiologist told me to keep her happy. The nurses were so attentive and caring. They kept Xofia entertained to the extent of kidnapping toys from lockers they didn't know who owned. At about 2pm, and while Xofia was under general anesthesia, I went to the waiting lounge to start my longest 3 hours. Dr. Charles Cuaso, Dr. Jonas del Rosario, Dr. Dexter Cheng and Dr. Kelly Pasimio then entered the cath lab. Dr. Cuaso, before he entered, said, "We will try and hope, but no surprises, ok?"

I could have watched, but I didn't. Apart from the fact that I wasn't sure I could handle it, I was confident that my baby was under the care of the best team of pedia cardiologists anyone can hope for. I can endure the wait.

I will not go through the details of how I dealt with the knots in the pit of my stomach and those lodged in my throat. I was only waiting for Dr. Cuaso or any of the doctors to come out of the door. While all our friends were praying, attending and offering masses, every piece of me hoped and prayed that the transcath procedure will be successful. Just please, don't let her have to go through open heart surgery, please!

Relieved and grateful beyond words
Three hours after, I saw the smiling face of Dr. Cuaso, the team of doctors by his heels, and I welled up even before he was able to do a thumbs-up. The gratitude that I felt is beyond words. Words, emails, texts, hugs can never do justice of the happiness I felt. We are forever grateful to everybody who extended help and time. We are extremely thankful for all the prayers. God must have heard the noise you guys were making!

Xofie only has a couple of puncture wounds on her groin area. It's nothing compared to open heart surgery. Now, the only problem is how to keep her from playing too much and running around. I hope she understands me when I explain that she has to let the booboo in her thighs heal before she can run. I think she does, but only for about three seconds, and she's off running again.

Needless to say, THIS is the best gift any mother could have. Happy mother's day to all mothers out there who knew exactly what I endured. We are tough, mommies! Oh, yes we are!

6 comments:

Ligaya May 10, 2009 at 6:33 PM  

Happy mothers' day Bern! I'm glad it all went well for your little angel. :)

peenkfrik May 11, 2009 at 7:17 PM  

Wow. You are a very brave mom. Xofia should be very proud of you. I know she is.

I'm happy for you, your daughter and for everyone else who endured those moments with you.

alven May 13, 2009 at 1:03 PM  

am relieved. and yeah, they slap like hell. they don't try to sugarcoat it. if they hate you at that moment, you'd know.

but bern, grabe no. the things xofie has to go through. you and bongkie had to go through.

i can't see myself holding up in your shoes.

thanks be to God for Xofie's great health

Hazel May 17, 2011 at 2:08 AM  

Hi! I, too, had an ASD closure using the Amplazter last week (May 2011) and I'm 31 years old. Technology is awesome, don;t you think? Im so happy for your daughter.. I know this was 2 years ago. :)

Anonymous July 21, 2011 at 10:30 AM  

Hi!Chanced upon your story while researching for my nephew who needs VSD closure. if you don't mind me asking, i'd like to know how much it cost. We are currently trying to source out funds for his operation.will appreciate if you can email me at amorescobar@yahoo.com

thank you very much.

Purpled Sky August 15, 2011 at 10:40 AM  

@Hazel: Thank you! It was the biggest hurdle and challenge we've ever encountered. The memories are still so fresh. Indeed, technology is amazing!

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