Ukraine Boy Experiences Heart Failure

Baby Bogdan was born on 09.12.2013 in Kiev, Ukraine.

Eight hours after birth, he was moved into intensive care where cardiologist suspected he may have some sort of heart disease. But there suspicions were not confirmed and after two weeks in intensive care, we were discharged home.

Bogdan was so well developed that we couldn’t imagine anything stopping him. During the second week of life, the child was quietly holding his head up, by the end of the third month he was already sitting. In the fifth month, we specifically hired a technician to physically engage with the baby, because Bogdan was very strong and vigorous. The coach then said
that this baby was a true champion. At this time, we had just done the third in a row DPT vaccinations.

Before the third dose of DPT, we drew attention to the fact that the child had lost his voice and a
few days before the injection he was a little pale with blue tint to his fingers during sleep. The pediatrician carefully
examined the baby and decided that it is was still safe to vaccinate.

On the second day the child became lethargic, and after the third we were in intensive care with heart failure. We have appealed to many experts in our country, no one could give a plausible answer. For all surveys the baby is healthy, but there is a problem with his breathing. By chance, one of the doctors suggested that the child may have glycogenesis, because all the analysis, since the hospital, glucose values were below normal. That’s when we first passed the analysis of TMS (Bogdan was 7 months.) Glycogenesis of any type is not revealed, but it turned out that there is a problem with the lack of acylcarnitine in the blood …

His preliminary diagnosis is as followed:

Congenital inherited disorder of mitochondrial β-oxidation of fatty acids. Respiratory distress syndrome.
Endobronchitis. NAM 1-3 Art. Metabolic encephalopathy in history. Carrier tracheostomy with 05/16/14,
the patent foramen ovale. Thymomegalia.

Doctors at the Metabolists Medical Center of the Okhmatdet Clinic were sure that he has one of these two disorders:

• Carnitine palmitoyltransferase II deficiency CPT2 gene
•  Carnitine translocase deficiency SLC25A20 gene

Diagnosis:

• Congenital genetic defect of mitochondrial fatty acids β-oxidation
• Respiratory distress syndrome.
• Endobronchitis. 1-3 stage respiratory disturbance.
• Metabolic encephalopathy in past medical history
• Convulsive disorder in past medical history
• Statokinetic development delay.
• Tracheostoma from May 16, 2014
• Patent foramen ovale
• Thymomegalia.

Major health problems:

• The flattening of breathing during sleep (night / day) up to the stop (raising and lowering CO2 SpO2) as a
  result of assisted ventilation using a ventilator CPAP mode
• Tracheostomy.
• Excessive sweating

Bogdan also needs special medical nutrition Monoget and L-carnitine. When he wakes up, he’s himself, breathing and very active. Bogdan grows, develops, stomping, playing and makes us happy parents. The kid is smart, strong and resilient. In Ukraine, we did all kinds of tests, but the explanation was never found: what kind of violation, whether the genetic origin of the violation and whether there is a connection to the underlying disease and respiratory
disorders.

We are always looking for answers, and you can connect with us here: https://vk.com/pomogibogdanu

Sincerely, with hope and gratitude,

Bogdan’s Family