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She’d want to fly, but she has no wings
She’d want to cry, but for now, she has no voice…
She’d want to eat a lot, but she’s only allowed a few, because… she doesn’t tolerate food and she suffers oedemas…
She’d want to live a normal life, but her heart congenital malformations are not allowing it…
In medical terms, the diagnosis is dextrocardia, arterial trunk IVth degree, pulmonary artery atresia, DSV, DSA and atypical permeable arterial channel. In human terms, it means a lot of suffering and a baby of not even 2 months that spends her time connected to a lot of medication drips and machines, instead of laying in the loving arms of her mother.
Following the reconstructive surgeries, she might live almost normal, with medication and proper survey.
Sonia was born on June 6th, 2007, but since she was born, she has seen her home and her crib for only 4 days…
She was born in the maternity of Elias Hospital in Bucharest, weighing 2270 g, 46 cm long, but in the hearts of her parents, she weighs as much as the whole Universe…
Her parents wanted this baby from all their hearts, the pregnancy was monitored by doctors thought be the best… How could these doctors not have seen such serious malformations (not even the fact that her heart is on the right???…)
Throughout the pregnancy, the mother went to her medical check-ups as often as she was called in, even sooner… All pregnancy morphologies indicated that the heart and all adjacent blood vessels were in the normal position. The last weeks of pregnancy were spent in the hospital, the mother being diagnosed with preeclampsia (high TA). This, as well as the intrauterine growth retard was the reason for which Sonia was pulled-out through c-section, with an Apgar 9 at birth.
Six days after, hell began…
The doctors of the maternity admitted that the cyanosis signalled since the second day of birth may signify heart problems and cannot be exclusively put on dismaturity (a baby born at the term, with lower weight than normal).
The same day, she was investigated through ultrasounds by Doctor Alin Nicolaescu, with a result indicating: dextrocardia (the heart positioned on the right side), arterial trunk type IV, DSV (ventricular septum malfunction) 9 mm large, oval foramen (atrial septum malfunction) 4 mm large.
Under these circumstances and with all these heart malformations, she was transferred to IOMC (Institute for Health Care of Mother and Child).
Ten days after her birth, after a constant desaturation down to a value of 35%, a permanent drip on prostaglandins was required, in order that the blood flow to the lungs be still made through the permeable arterial channel (normally, it closes on birth). It was also required a permanent connection to oxygen.
A more thorough investigation of Sonia’s heart (that I understood to be as small as a strawberry) was required, called cardiac catheterism. This was performed by Doctor Pavel Platon at the “CC Iliescu” Institute for Cardiovascular Diseases. After a 3 hour investigation (half an hour would be sufficient for an adult) during which the doctor told he “almost lost her”, which was a first performed on a baby this age (2 weeks) as I understood, the following diagnosis resulted: dextrocardia, pulmonary artery trunk atresia, common arterial trunk type IV, large DSV, DSA (oval foramen), visible pulmonary arteries charging from the descending aorta, without the mention of permeable channel persistence.
After another week, another heart ultrasound was performed by Conf. Dr. Anca, which one more time signals dextrocardia with biventricular hypertrophy, large DSV. It is also mentioned that from the left topographic ventricle originates a vessel with aortic type morphology. The arterial trunk described presents in the ascending area a bifurcation that generates the trunk of the pulmonary artery that presents a moderate turbulent flow as opposed to the emerging flow form the descending (aortic) area of the vessel. In another week, after exactly one month of life, during a different ultrasound examination, it becomes noticeable that the DSA and DSV begin to shrink, an undesired thing in her case, because with them, it was also shrinking the possibility of oxygenating the blood.
The evolution was favourable, progressively lowering the level of the prostaglandins drip and oxygen until the day they were no longer considered necessary, her being disconnected. After a few days she was checked-out from the hospital, with the mention “the baby has a satisfying general status”.
For 4 days, Sonia has been able to lay in her crib…
On the forth day, the hungry cry would not stop… She was trying to eat but she couldn’t stop crying. It was no longer her common cry, she was moaning and she seemed to be suffering. At once, she stopped breathing, she went into cardiac arrest. My mother put her on the couch and resuscitated her with her thumbs until she started to breathe and moan again. We left immediately for the hospital, were she was again monitored, with saturation 35%, cardiac and respiratory insufficiency. The doctors said that if we had been 10 minutes late, she would have died. There was a whole medical crowd around her: they intubated and ventilated her, they sedated her. She went into another cardio-respiratory arrest. Until the next day, she already had a fever of 39oC. An intestinal infection was identified: she had faeces composed of intestinal mucus, she eliminated from her intestine walls…
In addition the administered antibiotics, the prostaglandins had to be reinstalled, and others as well… the doctors tried 5 times to catch a vein, they succeeded only once. She had bruises on her head and her hands were riddled and full of dried blood… With all the continuous sedation, she woke up during the night and pulled out a catheter… there was blood all around her. The telepathy between mother and child functioned once more: the mother felt she was crying, even if she couldn’t, because of the ventilation tube in her mouth. A new catheter was installed (a tube down her jugular artery to her heart) through which various drips were administered…
Too much sadness for such a tiny soul…
She would cry, with that silent shout, at every touch…even when I changed her diaper… She had numerous cables coming out of her, a tube down her throat, a needle in her sub-clavicle, the probe down her nose to her stomach (she no longer knows what a feeding bottle is..).
The evolution was once more favourable… it proved that Sonia is a fighter, she managed to breathe on her own, just on oxygen… so that slowly, her voice comes back to her…
But still, the rest of the cables and the constant monitoring stayed.
A first step in saving Sonia would be an urgent surgery (as long as her state is still stable) of substitution of her permeable arterial channel kept open by the prostaglandin drip. The hospitals in our country that have already performed such surgery have refused the intervention in this case… It’s the time of the summer holidays… And another infection could be fatal for her…
Sending the medical analysis abroad to various hospitals, we found understanding at the hospital “German Heart Centre Munich” in Germany for an urgent shunt surgery, which will keep her alive until the reconstructive surgery that will be performed at the age of 6-9 months. Doctor Pedro del Nido from Children’s Hospital in Boston has recommended this age for total reconstruction, in order to spare her from a fourth surgical intervention of replacing the tube that will substitute the pulmonary artery (which, until an adult age, would have to be two times actualized corresponding to the dimensions).
Even if until now she has gone through what others go through during a whole lifetime, with a proper reconstruction of the heart she might celebrate along her parents her eighteen’s birthday and she might event get to retirement…