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Ben’s heartbeat was noticeable when Ben was born, but doctors assured parents that this happens to one in two children. Then the anxiety subsided, but not for long, says the boy’s mother, Eglė (name changed).
Unexpected diagnosis
Eight months later, unsuspecting, the parents took little Ben to the LSMUL Kaunas clinics for a preventive medical check-up. After the tests, alarmed doctors ordered the search at the VUL Santara clinics. Then the parents realized that something was really not right. Although until then there were no symptoms of the disease: the weight grew as a healthy child, the child developed well, but the diagnosis of restrictive cardiomyopathy was made by doctors when he was only 8 months old. The diagnosis of restrictive cardiomyopathy is the rarest form of cardiomyopathy and progresses extremely rapidly. There is no cure for this disease, only sustained relief of symptoms.
Life with an extremely rare disease.
With the start of treatment, frequent visits to the doctor became part of life. Ben’s parents had to watch their son’s health change: the boy’s body began to accumulate fluids, his belly and face began to swell.
Doctors have talked about heart transplantation as the only way to recover from the start of treatment. It was the only way for the son to live a normal life, but, as Egle says, the family expected and expected a miracle: avoid a heart transplant.
Pandemic challenges
Benuko’s health deteriorated just after the start of the first wave of Covid, when extremely strict restrictions were put in place and even loved ones were unable to attend. Little Ben found himself in resuscitation. We can only imagine the ordeal that the two-and-a-half-year-old boy and his parents underwent then.
Benuk was found in resuscitation because the accumulated fluids in the body put pressure on the organs, making the heart difficult. Only more than a month later, doctors were able to help the boy. Egle remembers this stage as one of the most difficult, after all, his son could not calm down, hug or just be close.
Transplant – the only way out
As Ben’s situation continued to deteriorate rapidly, the medical council decided to add the boy to the waiting list for the transplant. The family was informed that the documents required for the transplant had to be completed. Egle says the hardest thing was psychologically realizing that transplantation is her baby’s only way to live. The woman is immensely grateful to the doctors and parents who have had similar experiences for their support, without whom she would not have gotten over this special experience.
Eglė, who is being interviewed by the SAM National Transplant Office, says that even before the birth of the second child in the family, she had already signed an online consent to become an organ donor. However, family members with a different vision of donation, who were shocked by the family after the disaster, changed it completely. Now everyone unanimously agrees that donation is an infinitely noble and important act that can bring another person back to life or at least significantly improve it.
Fateful call
Egle eagerly recalls the day his family learned that a suitable organ donor had emerged. The day started as usual, in the morning we took Ben with the grandparents, we went to work ourselves. When the doctor called, Egle remembers thinking it was due to the next preventive health checkup. Upon learning of the emergence of a suitable donor for her baby, the woman was overwhelmed with mixed feelings. “I was shocked. The first thought is everything. Let’s save or …”, – remembering the fateful day, Egle’s voice begins to vibrate.
The mother of two says the family was already living with Benuk’s disease, so this unexpected news surprised her. Egle had a great test to control his emotions and not transmit them to the child. He did it: Ben went to the OR with a smile.
Doctor’s comment
“Restrictive cardiomyopathy: this disease is very rare, out of 20 transplanted children, 2 cases required a heart transplant. Ben’s disease is particularly rapid in the progression of the disease. Contractions of cardiac function were sufficient, but due to the muscle stiffness, heart muscle relaxation decreased, kidney and liver dysfunction developed, and pulmonary hypertension became more pronounced.The child was swollen, fluids accumulated in the abdominal pleural cavities.
This disease is insidious because there are no symptoms for a long time. Boy up to 1.5 m. grew up without health problems. I think Benuk is very lucky to have received a donor heart on time. I’m happy to say that the boy is feeling great at the moment. It changed beyond recognition after transplant.
I want to thank the entire team that contributed to the treatment of this child. Miracles are performed in Lithuanian medicine, our country really has something to be proud of! ”Explains Rita Sudikienė, a cardiologist at the Santara Clinics, in a press release.
Always grateful to the donor family
After the operation, the boy quickly began to get stronger. One week after the transplant, little Ben was removed from resuscitation. The child was getting richer, it was difficult to sustain. “It was difficult to ask my son to behave more calmly, because the postoperative period is very sensitive,” smiles Eglė. Now these experiences are only reminiscent of the few postoperative scars left that will become less and less visible over time.
After the transplant, the boy became unrecognizable: before in a calm way, now he is a restless boy who has a childhood. All this was possible only thanks to the decision of the loved ones of the next child. Egle’s family will always be grateful to the donor’s family ”. For a long time I thought about contacting them, writing a thank you letter, but for us it is still a very sensitive topic. Everything is still fresh. I think the donor’s parents feel the same way. I want to say the biggest and most sincere THANKS. We are very grateful that the donor’s parents made the decision to donate the child’s organs. A part of your baby is still alive, help Ben to live.
The donation has irreversibly changed our lives and we will be forever grateful for it. In our history, we want to invite everyone to be more interested in organ donation, dispel myths and overcome existing fears ”.
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