“We said goodbye during baptism in the hospital”

They were prepared for Aaron’s life to be a struggle. The fact that a sister can share the fate of her brother, neither her nor him, in his darkest dreams had dreamed … The story of these siblings is truly shocking.

Apparently, life begins at forty. Martyna is 17 years away from the “overrated figure”. Patrick – only 16. But so far their lives resembled a drama based on Murphy’s laws …

1. Amelia and Aaron Śmietański are twins born in the 28th week of pregnancy.
2. Shortly after birth, Aaron scored 7 points on the Apgar scale. Doctors were unable to make an accurate diagnosis for a long time, suspecting other diseases. It was finally established that the boy suffers from cystic fibrosis.
3. Soon Amelia was also hospitalized, and she was diagnosed with hydrocephalus. During the neurosurgery, the doctors made a small hole in the skull and inserted a drain into it.
4. Since then, the child’s condition has deteriorated significantly. It soon turned out that the drain was too deep, damaging the girl’s brain.
5. The Ombudsman for Patients’ Rights initiated proceedings in the case of Amelia Śniegocka.
6. Amelia and Aaron’s parents are appealing for 1 percent of the tax.

If anything can go wrong, it will

In the life of Martyna Śmietańska, the question “why” appeared several times. For the first time, moments after giving birth. 28th week, twin pregnancy and stabbing pain in the lower abdomen, which she mistook for an intestine. She was only 19 years old. In the evening, feeling nervous, together with her husband Patryk, she went to the hospital. She took nothing with her except her pajamas, slippers, and a toothbrush. She thought: “I’ll be right back”, she stayed for longer. For the first three days, doctors tried to inhibit premature contractions, but when ultrasound diagnosed detachment of the placenta, a complication that happens once in 150-200 pregnancies, it was decided: native, or actually we cut. After a quarter of an hour it was cesarean.

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The children went to the “heart of the facility” – to neonatology, and their mother, who had a liter of blood and half a liter of plasma transfused, was placed in the laboratory for observation. After 24 hours, she was able to leave the bed and see the babies. Two incubators. One standing next to the other. Her personal “A-team”: Aaron and Amelia. He, for a premature baby, is a big boy: 40 cm, 1750 kg. She is only one cm smaller than her brother and half a kilo lighter. She looked at them, talked to them, she could even touch her hands after disinfecting her hands. There was no question of kangarooing. Anyway, after two days one incubator disappeared …

There is no such thing as a book accident

The boy, who scored 7 points on the Apgar scale, was taken by ambulance to the Neonatal Intensive Care and Pathology Unit in the other part of the city. Martyna stayed with Amelia, and Patryk followed with “enka”. – Aaron was in a serious condition, he could not return meconium, the X-ray examination revealed gastrointestinal perforation, the doctors decided to open his abdomen. I waited for four hours in front of the operating room – he says. The “white apron” brought the bad news: It was hard, the meconium poured into the peritoneum, the next day will decide … The kid survived, but during his stay in the ward he returned to the operating table five more times.

Blood screening tests yielded the final diagnosis, confirmed by molecular tests: cystic fibrosis – the most common “rare disease” in Poland, affecting primarily the respiratory system and the digestive tract. – What did I feel? Relief … We finally know … During my son’s short life, so many were suspected of him … Hirschsprung’s disease, malformations of the colon and anus. 10 cm of his intestine was excised, he had sepsis, after endless antibiotic treatment, focal lesions in his liver … We were not given a great chance to leave the hospital. We even baptized Aaron in the ward … And during the “Our Father” we said goodbye. I didn’t tell anyone but we bought a single stroller …

If you think everything is fine – you must have missed something

When Aaron returned home four months later, his sister returned to the hospital. During a routine checkup, a transhuminal ultrasound showed hydrocephalus. Martyna and Amelia entered the hospital and stayed there. During the surgery performed on the next day, neurosurgeons decided to implant a ventrico-peritoneal valve, which would allow unidirectional flow of the cerebrospinal fluid. A small hole was made in the child’s skull, and after cutting the tires, one of the two drains was placed in the fluid space. The second was placed in the peritoneal cavity. Both were connected by a valve located in the area of ​​the auricle. Unfortunately, there were complications … Within twelve months the valve blocked four times, and the doctors replaced the blocked drain every time. The first, second and third ran smoothly, after the fourth “fine” it ended …

— It was October 2017. Moments after her first birthday … decorated with pomp in a pizzeria belonging to our friend. Amelia caught up with prematurity – she walked by the hand, she said: “mom”, “dad” … It was Aaron who was in a weaker form – he was sitting on the sofa, leaning against pillows – says Martyna. They were already prepared for the fact that his life would be a struggle. The fact that a sister could share her brother’s fate had never been dreamed by her or him in his darkest dreams …

You should be scared when your baby is too quiet

Already sitting in front of the operating room, she had a bad feeling. The operation was prolonged … – Entering the room, I saw the nurses standing over Amelia holding an inflated sheet. I got scared… I thought: God, what happened there… It never happened before. One of the sisters said that some of the children feel cold when they return from the operating theater, but I was not convinced. Amelia was very anxious, screaming all the time. I tried to put on her pacifier, but her tongue was curled backwards. Her eyes were unaware… Even my arms didn’t soothe her. It tensed, bent like a string.

Soon after the baby was given the medicine, the mother and daughter were able to leave the ICU. For a short time – on the way to the surgery ward, the girl began to choke on her own saliva. There was an echo in the hospital corridor: “doctor, doctor!”, The nurses were running with the bed, chaos reigned. The girl was connected to medical equipment. Its saturation and pressure were measured and oxygen was administered. Panic was visible on the faces of all staff. The word “complications” ran through the conversations. – I was sitting by her bed, holding the hand and I couldn’t contain my tears. I was hoping our nightmare would end soon …

During the following days, Amelia was consulted by various doctors. Everything was described in cards, nobody informed about anything about the mother and father. All they said was that it was okay now and there was no need to worry. The parents were to find out about what it really is in a moment.

The light at the end of the tunnel is just the headlamps of an oncoming train

The “white aprons” said one thing, the mother saw the other. Uncontrolled movements, body bent, eyes running away … – Amelia didn’t hear at all. You could crack your pots and pans – no reaction. The sucking reflex ceased, she was fed through a probe with nutrients and milk. After one week, the child underwent an ultrasound examination of the head. The doctor looked at the picture and said the drain was too deep and there was bleeding. Need to operate immediately. Martyna froze. She thought about the next words in her mind: drain, too deep, seven days, baby’s brain. Everything happened at a dizzying pace. She wanted to ask if, if they corrected the mistake, her child would start talking, walking, reacting again, but there was no room for answers in her life. But there were often questions …

Every day she and Aaron came to visit Amelia, but her condition did not change after the operation. Doctors told her that the girl had epilepsy and that she would need intensive rehabilitation. One of the nurses suggested that she would transfer her own child to a hospital in Warsaw. At the end of October, Amelia was discharged home. – The physiotherapist did not believe that my daughter had ever walked. She said she might never sit down again. She has a large part of her brain damaged, quadriplegia, spasticity, asymmetry … At first I didn’t believe her … What do you know – I thought … I trusted the doctors who treated Amelia from birth.

They call themselves “imperfect” – just like others, they have tensions, grinds, quiet days, but less often they miss “nothing”. Until three years ago, they were completely green and terrified. What they didn’t know, they googled. – For a woman, motherhood is a challenge. A double was waiting for me. Terminally ill Aaron, disabled Amelka. Not even a marathon, but a triathlon for life. I told Patryk, if you want to have a wife in a psychiatrist, go back to work. He stayed at home.

Just as young married couples enjoy plasma or a coffee machine, they also enjoy the breathing monitor, air purifier, and specialized trolley. Just like most 17-year-olds write down meetings, visits to the hairdresser / barber, workouts in their notebooks, this is how they write rehabilitation: Amelia 50 hours a week, Aaron four. In a XNUMX-meter apartment, they created their own department and subordinated their whole life to children.

What is their day like? Like disarming a ticking bomb. What does their home look like? Like a battlefield. Children sleep in the next room with a camera, Amelia has a breathing monitor under the mattress, which triggers an audible alarm in the event of apnea.

– When it is good, we get up around 6.30. We stretch Amelia on the mat – each muscle group separately. During this time, Aaron has two inhalations, one after the other, followed by a 40-minute postural drainage to help clear the lungs of residual mucus. One of us puts pressure on his chest, the other is preparing breakfast. Later, Patryk takes Aaron to kindergarten, and we and Amelia stay at home and wait for rehabilitation as part of a home hospice. For the next one we go in the afternoon to the center near the clinic. We go back, cook dinner, Patryk brings Aaron from kindergarten. Then we play with both. We are aware that these are two children born at the same time with different needs, but we do not want to separate them. We put together puzzles, make plasticine, read books to them, sometimes we go for a walk. Then we come back, eat dinner, wash the kids, put them to bed. From 20 we have time for ourselves. And we fall most often …

You will find what you are looking for in the last possible place

Today neither Martyna nor Patryk are looking for an answer, but the question “why us” is still in the back of their heads. – When I found out about Aaron’s cystic fibrosis, I didn’t want to be a mom. How many nights have I cried? I don’t know … Muko is a cruel disease, you cannot see it, but it destroys from the inside. He takes his life prematurely – 24 years is the standard in Poland. And I don’t want to wake up in a decade with the thought that I haven’t used up our time. For me, my children are not different, they are unique. They are not sick, they are sick. Yes – they cry, scream, stomp … Rarely, it’s not hard, but I grit my teeth … and remember what they’ve been through. Aaron six operations, Amelia five. Their patient records are like unfinished books. Our boy will have a lung transplant in the future. Amelka’s stem cell transplant. Some moms ask me: how can I not be depressed? How could I be when our children need us so much …

Two years ago, Patryk and Martyna set up a sub-account at the “Heart for Maluszka” Foundation, to which 1 percent can be directed. tax. She also runs a children’s fanpage on Facebook: «Amelia & Aaron Wodogłowie & Mukowiscydoza» and their profile on Instagram. After hours, I write a book about what her family has been through. She is 23 years old, she likes the pink color and the Polish Tatra Mountains, which give her a sense of freedom. She describes herself as “the mother of exceptional twins”.

– What is 1 percent for us? tax? I can not say that it is a chance for a better tomorrow. But it certainly gives us the opportunity to function better today – explains Martyna.

Editors recommend:

1. “There are days when we both cry … Hubert from pain and I from helplessness.” Multiple Bone and Bone Overgrowth Syndrome (MHE)
2. My name is Moebius
3. The most common diseases of premature babies – respiratory distress syndrome, delayed development, enteritis

Don’t believe in miracles – rely on them

As attorney Joanna Lazer from the Warsaw law firm Lazer & Hudziak Adwokaci i Radcowie Prawni explains, patients can seek redress before the court for violating their rights. Increasingly, they are reaching for this claim and winning in court. Compensation for violation of patient’s rights may amount to tens of thousands of zlotys for one violation. The right to receive health services in line with current medical knowledge is most often violated, or the lack of informed consent to the procedure – comments advocate Lazer.

– In the case of Amelia Śmietańska, the Ombudsman for Patients’ Rights initiated explanatory proceedings. Such proceedings may end with the finding of violations of patient’s rights and ordering the medical facility to take specific actions to counteract similar violations in the future. Our experience shows that during the explanatory proceedings, the MPC refers the case to an expert in order to clarify medical issues and check whether the treatment was consistent with the current medical knowledge and whether it was provided with due diligence. In our opinion, there are grounds for pursuing claims – says legal counsel Małgorzata Hudziak.

You haven’t been able to find the cause of your ailments for a long time? Do you want to tell us your story? Write to the address [email protected] #Together we can do more