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After fighting for their lives, they defied all odds: mother shares the journey of her conjoined twins

Two days before my delivery date, the doctors provided injections to help mature the twins’ delicate lungs. With a heavy heart, I packed a bag and bid farewell to the comforts of home. Tears trickled down my face as I closed the door behind me and set off on a journey into the unknown.

  • 11 months ago
  • July 13, 2023
5 min read
Conjoined twins Agustín and Gael were born on March 17, 2016, with a grim prognosis. Despite the odds stacked against them, they survived and grow stronger with each passing year. Conjoined twins Agustín and Gael were born on March 17, 2016, with a grim prognosis. Despite the odds stacked against them, they survived and grow stronger with each passing year. | Photo courtesy of Belen Romero
INTERVIEW SUBJECT
Belen Romero lives with her partner in Villa de Mayo in the Malvinas Argentinas district of Buenos Aires. She is currently studying to become a public auctioneer. She is the mother of conjoined twins Agustín and Gael.
BACKGROUND INFORMATION
Conjoined twins develop when an early embryo partially separates to form two individuals. Although two babies will develop from this embryo, they will remain physically connected, usually by the chest, abdomen, or pelvis. Conjoined twins may also share one or more internal organs.
Although many conjoined twins are not alive at birth or die shortly after delivery, advances in surgery and technology have improved survival rates. Some surviving conjoined twins can be surgically separated. The success of the surgery depends on where the twins are conjoined and how many and which organs they share.

BUENOS AIRES, Argentina — I laid in the hospital bed for my regular checkup on my pregnancy when the doctor’s delivered unexpected news. The twins I carried in my womb were conjoined. Panic filled me as the doctors said my babies’ survival was uncertain. They seemed unsure on how to proceed. We faced a waiting game.

Throughout my pregnancy, my body became a battleground of emotions. Every doctor’s visit felt like an arduous task. Terror consumed me as I worried about their condition; about losing them. Each morning when I awoke, a wave of confusion rolled over me. How would I navigate all of this? What would I encounter at their birth? I refused to give in to the fear; I remained strong.

Two days before my delivery date, the doctors provided injections to help mature the twins’ delicate lungs. With a heavy heart, I packed a bag and bid farewell to the comforts of home. Tears trickled down my face as I closed the door behind me and set off on a journey into the unknown.

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Right before their first birthday, they slipped into a terrifying coma 

I endured the delivery by cesarean section and soon suffered an infection which hospitalized me for 15 days. My babies remained out of reach. My husband made his way from one hospital to the next, visiting me and visiting our boys. With assurances from the staff that my twins remained healthy, a surge of love washed over me, knowing they would begin their journey on earth.

Back home we managed to live in the present, taking nothing for granted. We knew any day could present new challenges. Then, just before their first birthday, they slipped into a coma from pneumonia. Gael went into respiratory arrest, turned purple, and began foaming at the mouth. We rushed to the hospital, then waited, fearing the worst.

Doctors referred to the situation as unpredictable and delicate. For three agonizing months, sleep evaded me. I spent my nights pacing around, wondering what was in store for us. By then, the doctors had connected breathing tubes to my babies’ fragile bodies.

Expecting the worst, we prepared our last goodbyes 

In a critical state, a sinister bacteria infiltrated my boys’ vulnerable systems, leaving doctors nearly hopeless. They called us in to say our final goodbyes. The weight of despair pressed upon our hearts. Then, like a scene in a movie, something miraculous happened. They stirred back to life in the blink of an eye. I could not hold back my tears.

Agustín and Gael’s separation procedure involved too many risks, so the parents chose to prioritize their safety. | Photo courtesy of Belen Romero

Perplexed by the unexpected change, doctors convened a meeting with us to discuss moving forward. We faced a daunting choice. The doctors believed we needed to intubate. They felt 99 percent sure the boys could not breathe on their own. By then, I knew my boys were fighters and I would not let them go. In a week’s time, my prediction came true. The staff removed their breathing tubes and they grew healthier.

The sight unfolding before our eyes left everyone in awe. A huge weight came off my shoulders. The worst part was over. Now, three years later, they’ve only returned to the hospital for routine checkups. With strength and resilience, we moved forward. Though their mobility differs greatly from their peers, they navigate the world with determination, exploring every corner of it.

As they grow, their connection to one another becomes stronger 

We once hoped the conjoined twins could be separated, but today we know the procedure would be life threatening. In the confines of our home, they explore every nook and cranny with an indominable spirit. A remodeled skateboard allows them to move around freely. Yet, challenges remain. Cradling them in our arms, holding their fragile bodies close to ours, we place them in a modified baby bathtub in the shower. To venture outside, we use a specialized orthopedic chair.

We do our best to stay positive, but outside the confines of our home, people stare. They approach us with intrusive questions, and it pains us deeply. While I often feel completely out of control when we are out in the world, I try to tune it out and instead, focus on their wonderful bond.

Their bond astonishes me. If one feels bad, the other knows immediately what hurts. They are intimately connected, and also very independent. That connection remains everywhere they go, including school. My husband and I also stand united. Our children represent the embodiment of strength and unconditional love. They inspire us every day.

I once hesitated to share their story with the world, but I now recognize the importance of unveiling this remarkable journey. It serves as a testament to resilience, and a symbol of survival against all odds. I give them all the love a mother can offer, and I encourage them to achieve the goals they set for themselves. As long as they are happy, I want to let them be whatever they want to be.

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