'Fullness of life': Born missing nearly all of his brain, Tomek is thriving today

During his mother's pregnancy, doctors said that Tomek, who was missing large parts of his brain, had no chance of his survival — but Tomek proved them all wrong, and is thriving today.

Key Takeaways:

• Tomek was diagnosed with hydrocephalus in the womb and was found to be missing significantly large parts of his brain. His parents qualified for an abortion in their home country of Poland, but they refused.

• Tomek was expected to die in the womb or at birth, but he survived.

• Doctors placed a shunt in this brain to drain fluid and eventually Tomek was able to go home with his family.

• Despite being born with just one centimeter of brain, he is now walking, saying words, and living a relatively normal life.

The Details:

Tomek's story was featured as part of Grupa Proelio's "Every Life is a Miracle" Campaign, highlighting the value of every human life. Tomek's parents, Michal and Alom, shared in the interview that "too much water was collecting in his head" during pregnancy, and doctors offered little hope that he would survive to birth.

"[I]t turned out that the situation was unfortunately insoluble, that medicine was unable to help us," said his mother, Alom. "We sought advice from specialists. We visited probably five gynecologists, and it turned out, unfortunately, the brain did not have the space to develop and our son would most likely die because medicine at this stage was unable to help Tomek."

Michal added, "Doctors gave Tomek no chance of survival. Initially, he was not supposed to survive even half of the pregnancy, and later he was not supposed to be born."

The couple searched for specialists who might be able to help their son. When they met with doctors from the perinatal hospice, they finally felt cared for.

Tomek - urodził się prawie bez mózgu, dziś zadziwia lekarzy

"Tomek's situation qualified us for an abortion, but we did not consider this option at all, and were still at a stage when we wanted to help our child, try all possible paths, and get out of this situation with the greatest possible care. Let him, also, if necessary, leave peacefully. And we also didn't want to be the ones who contributed to [his death]," said Alom.

Exceeding All Expectations

His parents prepared for the worst, and planned to help Tomek remain comfortable until he died naturally. At birth, his brain was only one centimeter in size. A shunt was implanted in his head as part of palliative care to drain the fluid and relieve him of pain. But then, Tomek surprised everyone by continuing to live. After a month, doctors were stunned.

"Even the doctors didn't believe it," said Michal. "Tomek is able to survive outside the mother's womb."

The couple hadn't bought a crib for Tomek, because they didn't want their older children to have hope that the baby would come home. But the Siostry Boromeuszki (Sisters of Mercy of St. Borromeo), who run a baby bank, urged them to take a crib "because you never know."

They were right. Tomek was soon home from the hospital.

Michal said:

The next steps and stages of Tomek's life were absolutely wonderful for us, in the sense that we didn't know what to expect. Yes, I know, we have seen how 'typical' children develop because we also have two fully able-bodied children, Laura and Mazius. However, here it was not entirely clear how these stages of Tomek's development would proceed.

And indeed, Tomek also began to develop. His body grew, became stronger, he played well, recognized objects, just like a 'normal' child, only at his own pace and with his own abilities.

Tomek's first three birthdays were spent in the hospital, but today, the family's life is more stable. Tomek is a happy boy who is "coping so well," said his father.

Tomek has four distinct diagnoses, each of which could cause significant issues on their own, including the inability to walk — but he can walk. They had expected more physical challenges for Tomek, but the progress he has made is "reason for joy," according to his mother.

He was also not expected to speak, but he can pronounce certain words and calls out with intention.

Alom explained, "For me as a mother, an important surprise was that Tomek did not suffer as much as I expected."

Supporting Each Other

Alom said it is not lost on her that she has the gift of her husband's continued support and presence in her and their children's lives.

She explained, "In our situation, it is certainly of great value and especially valuable to me that Michal is with us, right? Because statistics often tell us in situations, but also my eyes, that men often disappear. Women have to face problems and difficulties on their own, so I appreciate your presence, but also your technical involvement, strengthing our family, and guiding us. These are all very important things that I appreciate about my husband."

Michal responded, "I never thought about it that way. For me it wasn't a question at all or something to consider. I just walked step by step together with Alom. We were going in the same direction, just like a married couple [should], so supportive of each other."

That support has carried them through several head surgeries for Tomek, neural infections, and sleepless nights ensuring that Tomek didn't pull out the drains that take fluid from his brain.

"Sometimes there are better moments, sometimes there are worse ones, but even in these worse moments, peace is always with us," said Michal. "If we had had an abortion, everything that happened would not have happened."

Alom added:

There was also a moment in our lives when the whole family was also taking care of our 91-year-old grandmother, who was also losing strength. And it was a moment of verification of what true love is, the truth that each of us experiences certain weaknesses.

There comes a moment when grandma stopped being so useful in the sense that she was always cooking, preparing jars for everyone. She was very ahead and then suddenly it turned out that she was the one who needed help.

It was also a moment of great family coming closer together. I hope that our children also know that if there comes a time when they fail or face various hardships, we will also accept them.

Alom said she feels like "the happiest person in the neighborhood in the sense that I have the impression that life is what it is. Everyone carries some hardships. We also have ours."

Michal shared:

This is a life we certainly wouldn't trade. Yes, I definitely wouldn't give Tomek back. We lack nothing. Yes, we live life to the fullest. Yes. Even though we can't even fly somewhere else, believe us, this is the fullness of life and we have everything in abundance. God also took care of all our needs here.

He added, "The worst thing is that when you look at human suffering, you immediately feel sorry for it. And everyone says that 'if I were in your situation, I don't know how I would cope.' ... However, a person perceives his own suffering completely differently. Yes, the yoke is sweet and the burden is light."

The Bottom Line:

Tomek is not the only child to survive after his parents were told he did not have a brain.

In the UK, Noah Wall, who was born with only 2% of his brain, also defeated the odds and is now 13 years old. He was diagnosed with a rare brain condition while in his mother’s womb, and doctors told his parents, Michelle and Rob, that he would most likely never walk, talk, or eat on his own.

Today, Noah has 80% of his brain, he surfs and skis, and he aspires to one day be an astronaut.

Every human life has value and no one should be counted out based on a diagnosis.