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Let’s call it the Sun, because we cannot deliver it in real name due to the confidentiality procedures of the donor and the recipient in force in the country.
Mom Sun shares her family’s story because that is the only way to thank the donor’s family and publicly express her enormous gratitude to the doctors at the Santara Clinics.
“I fully understand the essence of donation. I know what it means to see my son weaken, wait for an operation that is difficult to understand, and realize that a donor is the same child as mine. His grieving parents thought of my son: a stranger , one unknown, one invisible, says the woman, who was asked to tell her family about the trials she was facing – A wave of anxiety washed over him when my son was 8 months old. Until then, there were no problems with health. During the preventive examination, the family doctor advised to consult with specialists in heart diseases, who identified a very rare disease for which there is no other treatment, only a heart transplant. “
Why do children’s hearts get sick?
“Restrictive cardiomyopathy is the rarest form of cardiomyopathy, progressing particularly rapidly, and this is what we found in this patient. It is damage to the heart muscle, when the muscle hardens and filling the heart with blood becomes more difficult. , explains Rita Sudikienė, a cardiologist at Clínicas Santara. – The disease is complex, it affects not only the heart, but also other organs: pulmonary circulation, liver, kidneys. The only treatment is a heart transplant. If the disease progresses and does not there is a donor, even more complicated scenarios are possible: if the disease also affects the lungs, only a heart-lung complex transplant could save the patient. “
Rita Sudikienė
Hearing such predictions, many would slide across the ground under their feet.
“After the first wave of horror, I had to gather and seek knowledge: what awaits me, how things are going. I thank the doctors who explain everything with patience and consistency, dedicating all the time necessary, so that there are no unanswered doubts or ambiguities. And believe them, inexhaustible abundance. I am very grateful to the doctors. “
Life before transplant
An eleven-year-old son also grows up in the solar family.
“I tried to imagine two children at home, more than once I had to reassure those who were upset: so I said it’s too difficult for my brother, his heart can’t be so upset. Well, then they were both dissatisfied”, he smiles the mother, remembering that the eldest told his mother about his brother’s heart transplant that he was convinced that everything would be fine, the brother would definitely recover.
Frequent visits to doctors became inevitable after the diagnosis of the disease: detailed health tests and pills were a necessary part of daily life, but after a regular medical check-up, the doctor’s council decided to place the patient in the waiting list for transplants: “The doctors explained everything: the final stage of the disease, the drugs no longer help, you must prepare for a heart transplant, – the sun says the event almost a year ago. – Feelings fluttered again. Although I already knew everything, that there is no other way, that this is the only way to get the son out of a disastrous disease. However, signing the documents was very difficult. I felt like I was writing a fateful phrase. “
The woman was also aware of the particularly low chance of such a transplant – there are very few child donors, only one per year, or none at all, so how long to wait may be unknown. Or maybe not wait …
Probably not even the Sun feels it, repeats the words “I will remember it all my life.” And the call from Dr. Rita Sudikienė will definitely be remembered: “We lived in a time when all phones were constantly checked, whether they were charged or working, so that the call would not be missed. And that’s when he called and said he was a donor, it was unexpected and terrifyingly scary. I gathered all my strength and attention, I asked the doctor not to miss a word, what to wear, what to wear, what not to forget. With the help of the phone, I cried, wiped my tears, packed things, and went out to find my son, who was with his grandparents at the time. Do you have tears often? In such cases, children do not need to see their mother cry. “
Doctors: “Our patient grows with firmness, stability and confidence”
The doctors who treat him speak so respectfully of their patient; there are no minute words, only the currently exceptional patient in the intensive care unit is being talked about seriously.
Cardiac surgeon Virgilijus Tarutis, who performed the heart transplant, says about the transplant that it technically went smoothly. In pediatric heart surgery, heart transplants make up a small proportion of all heart surgeries, and heart transplants are almost 10 times less common in children than in adults: “This transplant was necessary because of irreversibly damaged heart muscle. Given the infantile dimensions of the body, the uniqueness of the operation certainly contributes. This time, there were no complex anatomical blood vessels and complex cardiac lesions, and the physical similarity and the immunological compatibility of the donor and the patient were adequate, which made the transplantation a routine from a surgical point of view ”.
The anesthesiologist-resuscitator Virginijus Jakutis, who was asked about the patient’s health status, is first glad that the patient is already breathing: “It is a great rewarding achievement, only the fourth day after the transplant, and already he does not need artificial lung ventilation or negative signs. congratulates. Now it is important for us to prevent infections and to regulate a possible organ rejection reaction. Speaking of this donation process, I can rejoice that all of its stages went smoothly, both organ procurement and transplantation. Well, the helicopter couldn’t fly, but even with the ambulance, it stayed on time. If everything goes so well and continues, Christmas will be especially beautiful for this family. “
Regarding early post-transplantation, doctors are always very careful, avoiding commenting because everything is still very fragile: “We feel calmer when the patient is discharged from the intensive care unit or even from the hospital. However, in this case, when a heart transplant is performed to a minor, we understand that we are talking not only about this patient, but also about the participation of all people, the importance of organ donation is unquestionable here and is especially important for public education ”.
However, the doctors’ very cautious comments about the child’s recovery process are given by their optimistic words that the little patient is recovering: the new heart helps the other organs to recover: “We can rejoice that everything go so well R. Sudikiene – In view of this difficult pandemic period, I would like to say that we are doing our usual work, as is always the case, and are currently protecting our patients from infections. However, I want to wish my combat unit colleagues strength, patience and great support. I have great respect for everyone – doctors, assistants and cleaners, all of them. “
Last week, when a heart transplant was performed, it was also unique because it is already the 20th transplant performed for a child. VUL Santara Clinics is the only medical institution in Lithuania and the Baltic countries that offers heart transplants for children.
“When treating children with heart disease who have received a transplant, I can say that each child’s healing process is so unique that I probably would not have found two similar stories,” says Dr. R. Sudikienė. , heals and matures only in their own order, which we must learn to know and adjust to properly adjust the doses of medications. It is a kind of healing art that we create together with the little patient and his family. The concentration, the confidence and the appropriate attitude of the parents help to achieve that dream objective: the health of the child ”.
The unlimited abundance of emotions and thoughts fills the whole day of the Mother’s Sun: “It has not been a week since the transplant, and the events and thoughts would last for many years. I also think of doctors who are always close to their patients: loving, compassionate , attentive, understanding. The Christmas period and the quarantine further reinforce the feeling that everyone will have to go through all the emotions and stresses. “
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