Journey of healing, journey of faith

A mother shares her story of caring for her sick baby, hoping that this could somehow comfort and resonate with other struggling moms and parents.

My second child, Diego Lucas, was born at 5:29 am on the 31st of August 2022, to be exact. He was a healthy and happy baby boy, and as tired as I was from laboring the whole night, I was so in love with him. As he was born just a day before September, our Lady’s birthmonth, I entrusted him to our Mother. Little did I know what was in store for me and my little family of 4.

Diego was just a few weeks old when we started noticing that he was breathing noisily. We brought him to his doctor who identified it as “stridor” originating from the upper respiratory tract, so we were referred to an ENT pediatrician. She performed a laryngoscopy and saw his larynx inflamed. This led to our consulting other specialists, yet things remained unclear. We were advised to have Diego admitted to the hospital for a complete work-up.

Since it was the time of COVID, the protocols were heightened, leaving me alone with Diego in our hospital room. He was so fragile and small then, and to see him subjected to all the blood extractions and the uncomfortable procedures made my heart break. I remembered Simeon’s words to our Lady, “a sword shall pierce your heart.” This was the start of an uphill climb for us.

The doctors diagnosed him with Croup, a supposedly mild viral infection that causes airway obstruction. They kept us for a few days in the hospital. It was the week of his Baptism and I remember feeling troubled about whether or not to postpone it. But my husband insisted that we push through with the Baptism “by hook or by crook.”

‘Thy will be done’

God has a way of making His presence felt. As I was praying alone with Diego in my arms, from the hospital bed I saw a white dove fly past the window. And that assured me that God wanted my son baptized. Could you believe, we were discharged from the hospital the very night before his Baptism!

Despite our fatigue from the past days, on October 14th we were all present in Diego’s beautiful Baptism, administered by our priest relative, Fr. Jerry Orbos. It was an emotional experience. Yet, as peaceful and joyful as I felt, I had a mother’s intuition that we were not quite at the end of the tunnel.

Despite the medicines he was taking, Diego’s noisy breathing persisted and I noticed that his chest started caving in with every breath. On October 19th, we brought him back to his doctor, which led to an emergency admission due to respiratory distress. That afternoon at the Emergency Room was excruciating for me and my husband. We saw how they pierced Diego’s delicate skin over and over again as it was difficult to find his veins. He cried hysterically, and we cried silently with him. Because I wasn’t allowed to nurse him, I just held him close to me and did my best to comfort him. My heart was breaking for him again.

The doctors informed us that an emergency bronchoscopy had to be performed to check if there was any permanent obstruction in his airway. They told us of the risks and the possibility of an emergency tracheostomy, which means cutting a hole in his throat to make a new airway.

I remember feeling scared to the bones that night. “Lord, do you want to take my son?” I was thinking of the worst already. And then overcome by God’s grace, I suddenly felt at peace, and whispered to Him, “Thy will be done. Thank you for giving us the chance to baptize our son. Our greatest work as parents is accomplished, and whatever happens, he will go straight to Heaven.”

Well, he pulled through that night, without a tracheostomy. He was intubated with the smallest possible tube and brought to the Pediatric Intensive Care Unit (PICU) where he remained sedated.

The first miracle

When I saw him for the first time hooked to the ventilator, asleep that night, I felt an impulse from the Holy Spirit to ask for prayers in my Instagram Stories. I’m not one to post personal problems such as these on my feed but I needed all the prayers. I received so many replies from both friends and acquaintances saying they were praying for Diego. It was truly uplifting. At the same time, my husband and I were encouraged to pray consistently to Blessed Alvaro del Portillo for this intention. We asked for his intercession every day, and since then, he has granted us significant favors in Diego’s journey of healing.

They told us that Diego was to remain intubated until there were more definitive steps for treatment. He was fed breastmilk through a tube from his nose. He could barely move. It pained my husband and I to see him like that. We were storming Heaven with prayers.

Suddenly, one night, while I was alongside Diego’s bed, he began squirming and coughing. The doctors and nurses tried their best to keep his breathing tube intact, but from all his movement, he somehow spat out the tube. I heard his voice again for the first time. Everyone seemed to panic because his breathing support was out, but his vital signs remained normal. They decided to hold off the re-intubation, and that night Diego was free to breathe without a tube. It was inexplicable. But it gave us hope that he was stronger than anyone had thought. The doctor on duty told me that night, “He is the weirdest patient I’ve ever had.” That was the first tiny miracle for us. The next morning, they had to re-intubate Diego for his MRI.

The results from the bronchoscopy and MRI led the doctors to diagnose him with “Infantile Subglottic (or Airway) Hemangioma,” which is a benign tumor of blood vessels above his vocal cords, causing airway obstruction. This was why his breathing was noisy. The good thing about hemangiomas is that they grow rapidly and then shrink over time. It was just unfortunate for Diego that his was in a critical area. Because he was very little, he needed close monitoring.

Now, it was time to look for the right treatment. And this is when things started to get complicated. Propanalol was the name of the medicine that was on the top of the list. It was non-invasive, and proven effective for such kinds of hemangiomas. We were hopeful about this. They conducted a trial on Diego. It seemed like he was responding well, until a few hours later, he developed adverse side effects. So we took the next best medicine: steroids. We checked out of the hospital on October 25, and we treated him at home.

Cross for a birthday

The following month, on November 14, the eve of my 31st birthday, Diego had another emergency admission. God gifted me with the biggest Cross on my birthday. I had not yet gotten over the trauma of everything when we were back in the Pediatric Intensive Care Unit. I remember feeling the weight of everything, and thinking how in the world we were going to get through another major hospitalization. I prayed hard to Blessed Alvaro. Then on the morning of my birthday, God made His presence felt in the same manner as before. Another white dove flew past my window, and I received an inspiration.

God must have allowed this to happen on my birthday so that I could start a fund drive! I wrote a simple and humble plea and posted it on my social media account. There were groups of friends who started their own initiatives to pool money for Diego. This was also when my husband and I felt the strong ties to our spiritual family, the Work, as our brothers and sisters fervently accompanied us in prayer, generously shared their blessings, and helped spread the word. We experienced firsthand the kindness and magnanimity of so many people, including some we have never met.

With the donations we received, we were able to cover the hospitalization and set up the needs for his home management. We hired two caregivers and modified the nursery to liken it to a hospital room. This would be his “bubble” for the next months.

If we wanted to keep him safe and avoid any emergencies, we knew it would require major lifestyle changes. Everyone was required to wear a mask around him, including myself when nursing. We applied strict COVID protocols. His visitors, including our 2.5 year old daughter, would just greet him from the door, and this made him already very happy. Despite living like this, he was contented and healthy, and well-loved by his caregivers.

A few more hospitalizations took place, the last was on Mother’s day in May. It seemed like whenever a door was opened, it would only take a while before it closed again. We remained uncertain about his recovery.

“Increase our faith”

Yet God did not fail us and made himself felt, this time through others. We encountered a married couple with a son in a similar situation. That boy eventually outgrew his condition. Then there were two “angel” doctors who counseled us on what important decisions to take, which set us in the right direction.

By the time Diego was around 9 months, my husband and I reached the decision to stop all treatment and let his body heal naturally. We witnessed Diego steadily getting stronger, and breathing better.

Soon after, we learned that Fr. Fernando Ocariz, the prelate of Opus Dei, was coming to the Philippines. We were given the honor to ask a question in his  general audience at the MOA Arena last July 30. I talked about our struggles with Diego and asked how we could continue to remain prayerful and hopeful despite life’s challenges. That brief moment with the Prelate felt like the culmination of all our struggles in the past months. I believe God used all our suffering and hardships to orchestrate that one moment to give Him all the glory. Sharing with “the Father” Diego’s story was like finally writing him that letter that I had so yearned to write him each time we were deep in the mud with Diego.

What did the Father tell me, and the thousands of others there? He said that God always answers our prayers. When difficulties cloud our vision and we don’t understand why we are undergoing such trials, let us pray, “Lord, increase my faith.” Let’s have faith in the love that God has for us. Ask our Lady, he said, to increase our faith. She will do so because she is our Mother.

“Omnia in bonum

Diego turned 1 last August 31st. We chose to celebrate this milestone in the most fitting way - through a thanksgiving mass by Fr Jerry Orbos with family and a few friends. I believe the worst is over for Diego now. He no longer lives in a bubble. His older sister loves playing with him! We are all enjoying him with more ease and are looking forward for him to fully outgrow his condition.

I know my son will not remember any of these pains when he’s older, but all of these have already left a deep mark on the souls of my husband and I. My son’s healing journey has truly been a journey of faith for my husband and I. “Omnia in bonum” (Everything is for the good) continues to be our battle cry as we move forward with life.

Looking back at Diego’s journey, we see how God is never outdone in goodness and generosity. As a little way of “paying it forward”, I started a motherhood blog on Instagram (https://www.instagram.com/mother.verse). Here I share some short reflections on my motherhood journey, hoping that these could resonate with other struggling moms and individuals. I am happy to be connecting with others, and I pray that God will use me as His instrument to sow peace and joy.

Lastly, we continue to pray to Blessed Alvaro for Diego’s complete healing. We have been spreading devotion to Blessed Alvaro to our families, friends and staff who continuously pray for Diego. A few months ago, I received from my center a Filipino prayer card of Blessed Alvaro with his relic. That relic is a piece from his cassock.

As early as now, I am also praying for the vocation of my son Diego and have entrusted it to our Lady. In his first year of life, Diego has reached many hearts and inspired countless others to pray and do good works. I can only imagine the mission God will have for him when he’s older.

Zita Magalona-Orbos