Sa va prezint povestea Anei-Maria, o fetita de 6 ani obisnuita cu suferinta si spitalele inca de la citeva luni (fotografia este facuta la 5 ani...)!

Ana (asa ii spune mama ei...) isi cunoaste diagnosticele (de fapt, a memorat fiecare termen specific pe care doctorii l-au putut folosi pentru a descrie starea ei - are o memorie de exceptie!) dar nu doreste sa discute cu nimeni despre problemele pe care le are. La sase ani, mintea ei este la nivelul de cel putin 10 ani; isi doreste atat de mult sa apara inaintea celorlalti ca un copil normal si trebuie sa-i fii prieten foarte bun pentru a o convinge sa vorbeasca despre suferinta ei! Visul ei este sa devina doctorita si sa se poarte mult mai dragut cu pacientii decat au facut-o unii dintre cei pe care i-a intalnit!

Deocamdata, copilaria ei a fost departe de ceea ce reprezinta ea pentru cei mai multi. Internarile prea dese si perioadele lungi de refacere au tinut-o departe de ceilalti copii, au oprit-o sa fie impreuna cu ei la gradinita, au impiedicat-o sa-si faca prea multi prieteni. Daca am crede ca unora ghinionul li se tine de poala atunci Ana-Maria este una dintre aceste persoane!

Imi cer scuze pentru multimea de diagnostice si detalii de specialitate! Am facut acest lucru, simplu, pentru ca sper sa puteti lua legatura cu un specialist care sa stabileasca ce trebuie facut!

La un 1 an si doua luni (1994) este operata de ulcer duodenal (ulcer de stress). S-a practicat duodenoantrectomie cu anastomoza Pean Billroth 1.

La 1 an si opt luni internata cu urmatoarele diagnostice: enterocolita acuta, defect septal atrial (tip ostium secundum) - aprox. 140mm, incontinentia pigmentosa acromians, hipoplazia organelor genitale externe. S-a internat cu febra, paloare, ficat la 3 cm, splina palpabila la rechord, scaune cu mucozitati, suflu sistolic gr II, sp II-III, i.c. stg. parasternal, absenta labiilor mici si a clitorisului.

La 3 ani si o luna este internata la spitalul Marie Curie cu dgn.: Ssindrom de hipertensiune portala (melena si hipersplenism) - cavernom de vena porta, defect septal atrial, IPA... am prescurtat ceea ce era mai sus. Splenomegalia - aprox. 6 cm, ficat nepalpabil.

8 luni mai tarziu internata cu: hemoragie digestiva superioara si inferioara, hipertensiune portala subhepatica prin cavernom de vena porta, DSA,IPA,pneumopatie acuta, splina la 4 cm, hematemeza in primele doua zile de spitalizare, melena în primele 5 zile.

În mai 1998, la 5 ani si 3 luni, internata cu: sindrom de HTP prin cavernom... , hemoragie digestiva superioara.Se interneaza cu Hb pana la 6,6 g%. Vena porta în hil este inlocuita de un pachet vascular inconjurat de un manson fibros. Micul epiplon depaseste de 3 ori lumenul aortic si contine formatiuni varicoase. Colecist cu pereti ingrosati - contine formatiuni varicoase. Hemoragia digestiva s-a oprit prin instalarea sondei Blackmore.

3 luni mai tarziu un nou episod de melena si hematemeza cu Hb = 7,3 g%. A primit doua transfuzii de sange. Hemoragie oprita cu Blackmore.

Se pare ca in timpul acelei internari s-a constatat ca Ana nu are, momentan, indicatie de derivatie venoasa (dimensiunile venelor mici). In plus, la externare i se recomanda sa consume alimente moi pentru a nu rani VARICELE ESOFAGIENE!

Dupa alte 4 luni ( decembrie 1998) este internata de urgenta din aceleasi motive.

În mai '99, se pare ca a avut iarasi melena.

In iulie '99 internata cu: arsura gr. II-III reg. cervicala si scapulara stg., hemoragie digestiva superioara. Primeste îngrijiri, are o perioada de ameliorare dupa care are din nou sangerare digestiva cu HB = 6 g%. Hemoragie oprita cu Blackmore.

Dupa cum vedeti în ultima vreme situatia s-a inrautatit, hemoragia revenind foarte des. Imi dau seama ca pentru ea este oribil si as vrea sa stiu ca o putem ajuta si ce trebuie facut in cazul Anei pentru ca ea sa scape definitiv de probleme!
Imi puteti scrie daca doriti si alte informatii despre Ana-Maria!

Multumesc mult pentru rabdare si ajutor! Cu sinceritate, Norel Iacob

My dear friends,

I hope that some of you will be able to help Ana somehow! As you will see Ana is a little girl I met few weeks ago (six years old) who has big health problems!

She very often suffers because of gastrointestinal bleeding. Actually she was facing this first time being three years and one month old. (When she was one year and two months she suffered a surgical intervention because of a stress ulcer.) Having passed blood in a black stool she went to hospital with fever, pallor and a very bad general state. The spleen was felt at 6 cm. She came out with the diagnosis of portal high blood pressure because of an obstruction of the port vein (cavernom) and it was recommended not to eat anything which could be harmful for the oesophagus being suspected of esophageal varices.

Eight monts after that she went again to the hospital having superior and inferior digestive haemorrhage. She vomited blood on the first two days while in hospital and had black stools in the first five days.

She went again in hospital one year and half after that with digestive bleeding and haemoglobine = 6.6 g %. The bleeding was stopped with the Blackmore probe. Another episode after 3 months... and again after another 4 months... and after another 5 months... and after another 2 months (Haemoglobine = 6 g %). Many times she received blood by transfusions.

Besides these she suffers because of a heart defect from her birth!

The situation is getting worse day after day because as you saw the bleeding returns very often! Actually she is not able to go to kindergarten and, probably, will not ever be able go to school. Her mother is staying with her at home rennouncing at her job.

One day as she was trying to spend some time at kindergarten, she went to close the door a boy left open and the instructor screams to her to sit. Immediately she felt bad and got sick. In a few hours she went to hospital with digestive haemorrhage.

Ana is conscious of her diagnostics ( in fact she memorized every specific term the doctors had used in order to describe her case - she has a fabulous memory!) but her wish is not to talk to anybody about her diseases. At six years old her mind works like an ten or twelve old one; she wishes to appear to others as a normal person and you must become a good friend of her in order have her agree to tell you something about her sufferings. Her future dream is to become a doctor and be much more kind with the pacients than the doctors she met were.

We must found anything helpful for Ana! So, I ask you to send me any useful information you may have or suggest me any contacts! Keep her also in your prayers! For sure she deserves something better than to be labeled as a person with handicaps! I'll send you the future news about this!

Thankfully yours, Norel Iacob