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Helping a friend in China: original post can be found at:

the translation from my friend is below: thanks a lot

boy was born in Sept. 2008 with congenital heart disease, TOF(tatralogy of fallot), , (known after born, and best operation chance is 6-12 months as recommended by doc). but was growing well, by 8 months, he was 78 cm tall and 9km weight. at end May, his parents took him to Fuwai hospital (china and asia's best hospital in this aspect), Ultrasonic was done, and found his Pulmonary Artery functioned well. doctor said this was not severe, and TOF is not a rare disease, and success ratio of operation is 98%. also, since the result of the ultrasonic was good, doctor said Echo was not necessary, as Echo would do harm to this baby. Parents did not know much, besides following doc's suggestion. on 4th June, operation started at 2:30 PM, by 7:30, doctor informed parents, they found big collateral, and had to send baby to do Echo to block them. by 10pm, doctor told parents had to do another operation as some collateral could not be blocked, operation was finally finished at 3 AM, 13 hours in total, and baby sent to ICU. later, doctor informed parents they found 6 big collateral, blocked 3, and 2nd operation was done on baby's back to block the rest.
baby stayed in ICU for 2 months, first 5 days, circulation was very bad. kidney was not functioning, no urine. peritoneal dialysis used, after 5 days, circulation got stable. on 15th Jun. ventilation machine was removed finally, peritoneal dialysis stopped on17th. but baby's hemogram increased much during 13-17th to 30 and 40 thousand with fever, til 18th, Sputum Culture finally became positive, burkholderia cepacia diagnosed, Meropenem taken. Boy did not eat much all the time. on 18th , ventilation machine used again. 19th ,bleeding with trachea. doctor lowered frequency for using sputum catcher (?), but every the other day, when it is used, there was bleeding. 25th June, bleeding in lung,Echo and collateral blocking done again. blocked 2 big ones over right upper lung, leaving another one in right upper lung and left lower lung unblocked. on 3rd july, another bleeding, doctor blocked the one on right upper lung, the other one unblocked. repeated bleeding, meanwhile, the mam tried all means to bring appropriate and nutritious liquid food for the baby, he ate more. on 6th and 7th , two serisou episodes, trachea blocked by dried blood and secretion. while emergency method taken to clear the block, caused bleeding again. baby suffered trachea bleeding for a long time, and doctor could not conclude the reason, might be the collateral unblocked on lower left lung, or because some vessel infection with ulcer.
the mother wrote about the first time when she was allowed to see her baby on 16th June, how doctor warned her to be prepared, how she had imagined his face, and how shocked she was at the first sight, she did not recognize him. there were some pics posted. paralysed me almost. due to the operations and days of bleeding, the boy was not the same at all. but he recognized his mom, he breathed quicker and shaking under the sheet. the doctor had to ask the mom to leave for sake of the baby. that is when i told meself no matter how sad it is to translate the topic, i have to do it for the baby and the mom. i am deeply touched by the parents.esp the mom. she must hate herself for bringing the baby for the operation. but what can she do. parents do everything for good of the baby, they chose best hospital and listened to the experts. there are return posts accusing the parents, i think they are so cruel. there are doctors also debating there, giving terrible conclusions on the baby, saying he is done blablabla, is it true?
To continue, this is another strong-minded baby, he heard his mom's call maybe, or the prays all strangers are doing for him. no treatment can be done for the bleeding, he almost spent everyday curing the bleeding spots on his own. 16th Jul, no bleeding while catch sputum, hemogram 16 thousand. stable, no bleeding til 26 jul, on 27th , ventilation machine removed again, but next day, baby bleeding again with coughing. no bleeding til 5th Aug, then repeated bleeding again. burkholderia cepacia still. 13-20th Aug, stable. still in iCU. by 30th Aug, instead of full-time ataraxic, partial time ataraxic used, baby awake for a while in daytime. then ataraxic stopped on 3rd Sep, to be prepared for removing ventilation again. on 09th, machine removed, stable til 17th sep. less sputum, can swallow abit, trachea tube(?) removed. on 30th Sep, baby released from hospital, spent nationalday holiday and autumn day at home with family. family was so happy. still sputum in left lung, with abnormal sound, still less urine, had to eat 3 kinds of medecines to have urine. From the post I see, the hospital transferred baby from ICU to normal ward first, and told parents nothing to worry about before released him. but there is at least one collateral not blocked.
one thing is obvious, if Echo was done before the operation, everything would be different, all docs admitted this, but when he was released, his case study says"cured" pulmonary artery before oepration 8mm, supposed to be widened to 12mm during operation, but found only 9mm before release home. mom says before operation, it grew 1mm each month, after operation, no growth at all. also, EF value is low, he is taking medecine on that. besides, Pulmonary Artery Hypertension to 51.8
But from various return post, there is a doc, said, the baby suffers from renal failure. anyway, on 20th Oct, mom took him to another good hospital, had ultrasonic there, it showed, severe problem, child needs operation when he is 4 or 5 years old without right heart failure. serious narrow of Pulmonary Artery, 97 (sorry, canot google the term here, sth like pressure difference?), ventricular septal defect 3mm found.
Tianyou (the baby) also got support from a group of warm-hearted people, like QIQI, they have a QQ group too, in which all exchange info and find ways to help Tianyou. as far as I see, the topic was copied onto some overseas medical forum also, and some overseas return posts.
child taking chinese medicine also, sound in lung much better. and he added much weight after he went home. he laughs alot, gaining his old spirit before operation gradually. the mom is very cautious now, she wants to listen to all different sounds before she makes a decision now. however, not easy for her to get full copy of Tianyou's case study at the Fuwai hospital.
below is what i copied from another return post, but already questioned by a chinese doc. but seems majority was correct, i enclose it for reference. I attached some pics also.
my wife did not go to this kind of site very often so she just read the first page, and did not understand many of the terms with googling etc. she finally was able to find out what the problem was the kid suffers from a very complicated form of tetralogy of fallot, namely tetralog with pulmonar atresia which is one of the most challenging form of congenital cardio problems for normal case of Tetralogy, echo would be enough to diagnose. however, that does not apply to tetralogy with pulmonary atresia seems that more evaluation was needed prior to procedure since management of tetralogy with pulmonary atresia requires significant different steps it was kind of hard to extra what exact steps was completed during the operations, but there should not be concern of direct eisenmenger. Eisenmenger is a direct consequence when there is a hole between the left and right part of the heart. If the hole was repaired during the operation, there should not be blood flow between left and right.
     however, depending how the heart was repaired, the right part of the heart could be under a lot of pressure and that could eventually lead to failure of the right part it is necessary to consult a pediatric cardiologist most cardiologists did not need to deal with congenital heart problems

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Health Ace
5506 posts
WOW!!! what an article o.O , from what i can gather it seems like these babies are having a real hard time with bleeding... not sure if thats whats going on but thats in a giant nut shell how i took it. have any of them had any work ups done on their liver factors?? there could be a clotting disorder or possibly hemophillia. have they had any blood transfusions?

Sorry i'm not much help but just trying to get a better understanding of what is going on and what they have tried....
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