A Heart of Purpose - Journey in the life of a CHD Warrior, Baby Maxi

A Heart of Purpose - Journey in the life of a CHD Warrior, Baby Maxi Complex Congenital Heart Disease (DORV, PVA, Post PDA Stenting, Post BTS, LPA Plasty & Glenn Shunt)

15/06/2026

‼️🫀 Medical Update: Maxi’s Journey to His 3rd Open Heart Surgery 🫀‼️

On June 13, 2026, we had our scheduled appointment with Maxi’s Cardio-Thoracic Surgeon, the same surgeon who has been caring for him since his first open heart surgery in 2021, when he was still less than a year old.

After careful evaluation, Maxi’s 3rd Open Heart Surgery has been scheduled for June 29, 2026 (Monday). We will be admitted to Philippine General Hospital (PGH) on June 23 due to limited room availability.

The procedure is called Fontan Surgery, a major operation performed for children with complex congenital heart defects who rely on a single pumping ventricle. The goal is to improve circulation by directing blood from the body directly to the lungs, allowing oxygen-rich blood to be delivered more efficiently throughout the body.

What makes Maxi’s case especially challenging is that he only has one functioning lung.

Fontan circulation is generally designed to work best when both lungs are healthy and functioning normally. Because Maxi has only one lung sustaining him, there is no guarantee that the surgery will be successful. His heart and lung will need to work together to handle the unique demands of a Fontan circulation.

Currently, Maxi’s oxygen saturation levels typically range between 70%–75%, and when he gets sick, they can sometimes drop into the 60s. During our recent consultation, our surgeon shared that in the past, Maxi’s single-lung physiology combined with oxygen saturations in the 60s made them question whether proceeding with a Fontan operation would even be possible.

By God’s grace, we have reached this point where surgery is now being offered as an option.

We know this is a very rare and high-risk situation. We are praying and hoping that Maxi’s heart and single functioning lung will be able to carry the Fontan circulation and give him the chance to enjoy more years with us.

Our surgeon was honest with us about the gravity of his condition. If the Fontan circulation does not work, there may be no further surgical or curative treatment options available for Maxi. At that point, medical care would focus on supporting him and maintaining the best quality of life possible.

As heartbreaking as that reality is, we choose to hold on to faith rather than fear. We believe that God has carried Maxi through every battle so far, and we trust Him with the road ahead.

We humbly ask for your prayers:
🙏 For wisdom and guidance for his entire medical team
🙏 For a successful Fontan surgery
🙏 For Maxi’s heart and single lung to tolerate and sustain the Fontan circulation
🙏 For a smooth recovery and fewer complications
🙏 For strength, peace, and courage for our family
🙏 Most of all, for God’s perfect will to be done in Maxi’s life
🙏 Financial Provision

Thank you for continuously praying, supporting, and journeying with us.

Psalm 73:26
“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”

22/05/2026

Double Outlet Right Ventricle (DORV) sounds complicated because it is.

It is a rare congenital heart defect where BOTH major arteries, the aorta and pulmonary artery, connect to the right ventricle instead of one connecting to each side of the heart like they should. Infants with DORV almost always have a VSD, which is a hole in the wall separating the left and right ventricles.

In a healthy heart, oxygen-rich blood is pumped out to the body while oxygen-poor blood goes to the lungs. But with DORV, the blood flow becomes mixed and the heart has to work much harder to get oxygen where it needs to go. The VSD is ironically life-saving for those with DORV, as it allows oxygenated blood to cross the left ventricle into the right side of the heart so it can be pumped out to the body.

Many children born with DORV will require:
🫀 Open heart surgery
🫀 Multiple procedures throughout childhood
🫀 Lifelong cardiac care
🫀 Countless appointments, medications, and monitoring

Some babies are diagnosed during pregnancy. Others after birth when symptoms like blue skin, trouble feeding, rapid breathing, or poor weight gain appear.

And while medical terms can explain the anatomy, they can never fully explain what it feels like for families to hear: “Your child has a heart defect.”

Behind every diagnosis is a child learning how to fight before they ever learn how to speak.

Behind every diagnosis is a family carrying fear, hope, grief, strength, and love all at once.

Congenital Heart Defects are the #1 birth defect, yet so many people have never heard of conditions like DORV.

Today, we are sharing to spread awareness, honor every heart warrior living with DORV, and remember the heart angels gone too soon.

If DORV has touched your life, we would love for you to share your story below. ❤️

10/05/2026

Most people have never heard of the BT Shunt.
The Glenn.
The Fontan.
But for HRHS families these three words are everything.
Three open heart surgeries.
Three times handing their baby to a surgeon.
Three chances to keep their child alive.
The BT Shunt comes first.
Days old. Sometimes hours.
A small tube placed to create a pathway for blood to reach the lungs.
Buying time for a heart that needs it.
The surgery that gets them stable enough to fight another day.
The Glenn comes next.
Around three to six months old.
The BT Shunt removed.
Blood from the upper body rerouted directly to the lungs.
The heart’s workload reduced so it can keep going.
The Fontan is the final stage.
Around two to four years old.
The remaining blood rerouted to the lungs completely.
Without passing through the heart at all.
Three surgeries.
Not to fix the heart.
To work around it.
And it comes with a cost that lasts a lifetime.
Heart failure.
Liver disease.
Fluid buildup.
Arrhythmias.
Exercise intolerance.
These children are not fixed.
They are rerouted.
Brave.
Defying everything medicine said was possible.
And they carry it every single day.
They deserve to be understood.
Their families deserve to be seen.
💙 Drop a 💙 if this is your child’s road.
Comment WARRIOR and I will send you the link to our community directly.
Share this so the world understands what HRHS families are truly living with.
Follow Invisible Warriors — we share the moments nobody else talks about. So no heart family ever feels invisible or alone. 💙
Link in bio to support CHD families right now.

22/04/2026

There is a version of you that existed before the diagnosis.
I want to talk about her for a second.
She did not know what an echocardiogram was.
She did not know how to read a cardiac monitor.
She did not know what PICU smelled like or what ECMO stood for or what it felt like to sign a consent form for open heart surgery on a child who still had baby teeth.
She was just a mother.
Expecting the kind of life that most people get to have.
The ordinary kind.
The kind nobody appreciates until it is gone.
And then everything changed.
And she had to become someone she never asked to be.
Stronger than she knew was possible.
More fierce than she ever imagined.
More broken and more whole at the exact same time than any one person should have to be.
She had to learn a language she never wanted to speak.
She had to walk into rooms she never wanted to enter.
She had to hand her child to strangers and trust them with the most important thing she had ever been given.
She had to become a CHD mother.
And nobody asked her if she was ready.
Nobody gave her a manual.
Nobody told her that the person she was before that moment was about to become someone she barely recognized.
And some days she misses her.
The woman who did not know any of this yet.
The woman who worried about smaller things.
The woman whose whole body did not tighten every time her child coughed.
She misses her.
But she also knows something that woman did not.
She knows what it means to fight for someone with everything you have.
She knows what it means to love someone so fiercely that fear becomes fuel.
She knows what it means to sit in the darkest possible moment and choose to keep going anyway.
She knows what she is made of now.
And that woman she used to be?
She had no idea.
💙 Drop a 💙 if you have grieved the person you were before CHD changed everything.
Comment WARRIOR and I will send you the link to our community directly.
Share this for every CHD mother who became someone extraordinary without ever being asked if she was ready.
Follow Invisible Warriors — we share the moments nobody else talks about. So no heart family ever feels invisible or alone. 💙
Click the link in our bio to support CHD families who are still becoming who they never planned to be.

11/04/2026

💙 Bakit bawal paiyakin nang matagal ang batang “blue” (may cyanotic congenital heart disease)?

Ang mga batang may cyanotic CHD ay kulang na nga sa oxygen sa dugo—kaya sila nagiging “blue.” Kapag pinaiyak nang matagal, lalo itong nagiging delikado dahil sa mga sumusunod:

🫁 1. Lalong bumababa ang oxygen sa dugo
* Sa cyanotic CHD, may halo ng dugo (right-to-left shunt) kaya kulang na ang oxygen.
* Kapag umiiyak:
* Bumibilis ang paghinga
* Hindi regular ang paghinga�👉 Resulta: mas kaunting oxygen ang napupunta sa katawan → mas lalong nangingitim/asul.

❤️ 2. Tumataas ang demand ng katawan sa oxygen
* Ang pag-iyak ay parang “mini exercise”:
* Tumataas ang heart rate
* Tumataas ang metabolic demand�👉 Pero dahil kulang ang supply, nagkakaroon ng imbalance (supply < demand).

⚡ 3. Pwedeng mag-trigger ng “tet spells”
* Sa ilang kondisyon tulad ng Tetralogy of Fallot
* Ang matinding pag-iyak ay maaaring magdulot ng:
* Biglang paglala ng pagka-blue
* Panghihina, pagkahilo
* Minsan ay pagkawala ng malay�👉 Ito ang tinatawag na hypercyanotic spell (tet spell) — emergency ito.

🧠 4. Delikado sa utak
* Kapag matagal mababa ang oxygen:
* Pwedeng maapektuhan ang brain function
* Risk ng seizures o developmental issues kung paulit-ulit

😣 5. Vicious cycle (paulit-ulit na problema)
* Iiyak → bababa ang oxygen → mas hindi komportable → mas iiyak�👉 Lumalala nang lumalala kung hindi mapapakalma.

🛑 Ano ang dapat gawin?
* Agad pakalmahin ang bata (karga, comfort, pacifier, etc.)
* Sa kilalang may Tetralogy of Fallot:
* Knee-to-chest position kung may spell
* Sundin ang meds/oxygen kung prescribed
* Dalhin sa ospital kung:
* Hindi maawat ang pag-iyak
* Lumalala ang pamumula/asul
* Nanghihina o inaantok

05/04/2026

Mas madalas talagang magkasakit ang mga batang may congenital heart disease (CHD) dahil may epekto ang problema sa puso sa buong katawan—lalo na sa baga, immune system, at nutrisyon.

Heto ang mga pangunahing dahilan:
❤️ 1. Mahina ang daloy ng dugo at oxygen
* Sa ilang CHD (lalo na yung “blue baby”), kulang ang oxygen na napupunta sa katawan. Dahil dito, mas mahina ang resistensya at mas madaling dapuan ng impeksyon

🫁 2. Madaling magkaroon ng impeksyon sa baga
* Maraming CHD ang may sobrang daloy ng dugo sa baga
* Nagdudulot ito ng pulmonary congestion → mas madaling kapitan ng:
* ubo
* sipon
* pneumonia

🍽️ 3. Hirap kumain at tumaba
* Napapagod agad ang bata kahit sa pagdede o pagkain
* Resulta:
* kulang sa nutrisyon
* hindi tumataba (failure to thrive)
* Kapag kulang sa nutrisyon → mahina ang immune system

🦠 4. Mas vulnerable ang immune system
* Dahil sa kombinasyon ng:
* kulang sa oxygen
* madalas na impeksyon
* kulang sa nutrisyon
* Mas paulit-ulit ang sakit kumpara sa ibang bata

🏥 5. Madalas ma-expose sa ospital
* Regular checkups, tests, o operasyon
* Mas mataas ang chance na ma-expose sa iba’t ibang germs

14/03/2026

The Fontan pathway can feel overwhelming for many families. That’s why LHM has created this clear animation to help guide you through what the journey looks like for a child with half a heart.

Little Hearts Matter works to help families at every stage of their life with single ventricle heart disease offering support, information and advocacy.

https://www.lhm.org.uk/wp-content/uploads/2022/05/The-Fontan-Pathway-13.5.22.mp4

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