This is Tjas's Story  

 

Please read Tjas’s story as below – it’s a little outdated he is now 14 years old….

 

Check: http://homepages.ihug.co.nz/~jasminar/Iceberg.htm for an up to date picture!

 

 

Tjas was born with Transposition of the Great Arteries. He had a very stormy start and spent 1 month in the Neonatal Intensive Care Unit in Auckland New Zealand where several complications delayed his corrective surgery for a month.. This is his story...........

Click on a link below

  1. Labour and Delivery
  2. Resuscitation
  3. Progress in NICU
  4. Operation in Greenlane
  5. Tjas today
  6. zgodba v Slovenscini

Labour and delivery

Jasmina, (Tjas's Mum) was under independent midwifery care in Christchurch Womens Hospital in New Zealand. After a prolonged labour she was transferred over to hospital care. Within a short time Tjas's fetal heart rate had fallen below 60/min and stayed below this for 7 minutes prior to his delivery. The wrigley's liftout forceps procedure under episiotomy were used and Tjas was born at 00:40 on the 18th September 94.

Resuscitation

There was no heart beat or respiratory effort present at birth and following full resuscitation with intubation and ventilation Tjas's apgars were;

  • 2 at 1 minute,
  • 4 at 5 minute,
  • 6 at 10 minute,

He required full resuscitation which quickly brought his heart rate up above 100/min. Dispute full mechanical ventilation his saturations remained in the 50's. An urgent echocardiogram confirmed transposition of the great arteries. Prostaglandin was introduced and Tjas was transferred to an incubator and then flown to National Womens Hospital N.I.C.U in Auckland for stabilisation.

Progress in NICU

At 14 hours of age Tjas underwent an atrial septostomy and despite a good septostomy his oxygen saturations never improved beyond the mid 40's - 50's even with near maximum prostaglandin infusion. While in NICU Tjas required ventilation for most of his stay, his ventilatory requirements were out of the ordinary for transposition, undoubtedly complicated firstly by pulmonary hypertension and then recurrent pneumonia.

At 15 hours of age Tjas was noted to have seizure activity, this being after his atrial septostomy. Phenobarbitone was commenced. A head C.T scan and E.C.G were done and no abnormalities were found.

At day 12 it was noticed his abdomen was firm, necrotising enterocolitis was diagnosised and a course of treatment was commenced. Although a serial abdonimal radiography couldn't confirm this clincal suspicion.

After the clinically suspected NEC, a blood culture confirmed septicaemia, while under treatment for this he had three eposides of profound bradycardia and apnoa. On each of these occasions he required full resuscitation including cardic massage and adrenaline.

He left National Womens Hospital on the 14th October 1994 for corrective surgery at GreenLane Hospital. Tjas had the following problems.

  • 1. Hypotension-resolved
  • 2. Fluid Overload-controlled with fluid restriction
  • 3. Seizures-controlled with phenobarbiton
  • 4. Respiratory distress-pulmonary hypertension and recurrent pneumonia.
  • 5. Possible NEC-not confirmed and resolved.
  • 6. Septicaemia-continuing treatment with vancomycin.
  • 7. Differcult IV access.

Operation in GreenLane Hospital

On the 18th of October 1994, exactly 1 month old Tjas went under corrective surgery for transposition of the great arteries.

His body was cooled to 18 degrees celcius and bypass duration was 2 hours 13 minutes. Tjas had a relatively uncomplicated post-op period coming off bypass smoothly. Tjas spent 1 week in intensive care and made a rapid recovery. He was transferred to Christchurch Public Hospital on the 28th October and was discharged on the 29th October 94.

Tjas’s first oversees trip was in May 1995 when he went to visit his Babi Paulina and dedi Oci Brane and stric Brane in Slovenia, where his mum comes from. He enjoyed his days at Adriatic Sea and loved staying with his family in Slovenia.

 

 When he returned back home to New Zealand he was 10 months old and a months later he started to walk. His favorite toy was TV remote control. Tjas was always very quiet baby, with hoarse voice, but very happy.

 

When Tjas turned 3 and a half his mum went to study to become a nurse and Tjas went to preschool. He did not really like it at first, but soon made friends and enjoyed his time while there.

In 1999 when turned 5, he started school. The same year he went to his second trip overseas, again to visit his babi and dedi. This time we all went also to Disneyland in Los Angeles and Universal studios. We really enjoyed ourselves there. 

Next year Tjas went to Australia for holydays and visit Dreamworld, Seaworld and Movieworld there. He had good time with his brother Mikey, dad and mum.

 

Tjas kept manly healthy all those times. He had colds and coughs and developed asthma. He visited hospital with asthma few times, but his heart did not bother him all those years. His last Cardiology report in 1998 states:  “I was interested to see Tjas ad Cardiology clinic on 27/081998. I note the asthma and weak voice together with some cramps in the legs and ear infections, but overall his progress is very encouraging. He has an ejection click with a Grade ¼ ejection systolic murmur and a soft third sound. Chest X-Ray in March 1996 showed normal heart size with some prominence of proximal vessels. An ECG in May 1996 shown an axis of 50 degrees with partial right bundle branch block, but no left or right hypertrophy. On ECHO left ventricular measurements were 39 and 25 slightly dilated but with excellent contractility. Right ventricle was not dilated but aortic root (the old pulmonary outflow) is dilated at 28 mm. There is mild pulmonary regurgitation and although images are always difficult in this situation I believe we accurately assessed the outflow gradient at about 6 mmHg. With a limited view, pulmonary artery branches look satisfactory. There is trivial to mild aortic regurgitation and trivial mitral regurgitation. Functionally therefore Tjas’s heart is virtually normal and his prospects for the future are excellent. I thought we would check him again in about three years with repeat Echo, giving us a good baseline for the future.

Tjas has been diagnosed with right vocal cord paralysis in 2004. We hope he will get better and better and louder and louder

 

  TJASEVA ZGODBA

 

Tjas je bil rojen v nedeljo 18. septembra leta 1994 v Christchurch v Novi Zealandiji.  Takoj ko sem zajela sapo po tezkem porodu in pogledala , kje je in kdo je sad tezkega dela, sem zagledala belo gmoto. Vse skupaj je moralo trajati nekaj sekund, ko so to gmotico odnesli in zaceli intenzivno delati nad njo. Nic mi ni bilo jasno in sprasevala sem ali je moj dojencek ziv in kaj je narobe. Meni je izgledalo vse skupaj zelo dolgo , vendar je  vse skupaj trajalo verjetno le nekaj minut,  predno so mi obrazlozili, da so ga morali ozivljati in da je ziv fant! Na mojo zalost se ga nisem imela casa niti dotakniti, ker so ga takoj dali v transportni incubator in odpeljali v neonatalni intenzivni oddelek (NICU). Darren Tjasev ocka ga je spremil, z mano pa je ostala Vida, Slovenka, ki me je opogumljala med porodom in tudi takrat. Tjas si ni opomogel takoj, ko so ga pripeljali v NICU, kljub popolni ventilaciji, zato so naredili ultrazvok in ugotovili, da ima Transpozicijo velikih zil. Ker Chirstchurch nima otroske kardiologije, so nas poslali s privim letalom (Air New Zealand) v Auckland. Z Darrenom sva se odlocila, da bo z nami sel tudi najin sin Mikey, takrat 2in pol leti star. Ko smo prileteli v Auckland, so Tjasa poslali v porodnisnicni NICU, ker zaradi nestabinosit, ni mogel v kardiolosko Green Lane bolnico. 

S Tjsem sva ostala na tem oddelku mesec dni, predno je bil Tjas dovolj mocan, da so naju prestavili na kardiologijo. Med tem casom je imel probleme s pljuci, crevesi in zastrupitev krvi. Po telesu se mu je kljub ventilaciji samo 40 – 50 % kisika sprehajalo. Preluknjali so ga vsepovsod za antibiotike, prostaglandin, tekocino…. Predno sva pobegnila temu oddelku, je Tjas izgubil skoraj vse lase, ker so tudi scalp uporabljli za intravenozne terapije.

 Darren in Mikey sta se vrnila v Christchurch in prihajala na obisk. Na vezi smo bili preko telefona zelo pogosto, ker je Tjas prezivljal zelo tezke trenutke v svojem zivljenju, prav tako jaz, ki sem ga gledala kako je trpel in se mucil preziveti. Osebje v bolnisnici je bilo vecinoma zelo simpateticno z mano. Pocutila sem se kot nekje dalec v vesolju, kjer ne poznam nikogar in nic mi ni jasno, vsi pa imamo iste cilje – ohraniti zivljenja bodocnosti – nasim dojenckom.

Ko nama je uspelo priti na kardiolski oddelek in ko sem spoznala nekaj ostalih mam in ocetov otrok s srcnimi napakami, sem sele opazila kako zelo je Tjas bil bolan, koliko zivljenj si je ze sposodil se pred operacijo. Koncno 18 oktobra popoldan je Tjasu koncno uspel priti v operacijsko sobo. Kljub temu, da sem se zelo bala, ko sem ga izrocila v operacijsko sobo, sem si hkrati oddahnila. Brez operacije ni zivljenja, sem vedela.

Moram priznati, da so bili zelo tezki trenutki cakanja v parku pri bolnici. Z Darrenom sva imela telefon pri sebi in sva cakala klica iz opeacijske sobe, da nama sporocijo, ce so uspeli s Tjasijevo operacijo in ce je iz bypass aparata. Mikey je bil na sreco v varstvu v bolnisnici, kjer je imel igrace in posebno negovalko, ki je bila zanj za tiste par ur veliko boljsi kompanijon, kot mami in oci.

 Po telefonskem klicu, sva z Darrenom skoraj poletela na inetnzivno nego, kjer je Tjas lezal tezko seditiran, vendar ziv. Boril se je proti ventilaciji, kar je bilo pozitivno, ker je pomenilo, da je hotel dihati sam. Naslednje jutro, ko sem ga sla obiskati, nisem mogla verjeti svojim ocem. Tjas je bil roza!!!!!!!!!! Tezko je bilo verjeti ocem in tudi ocke je odprl (se zdaj mi stopijo solze v oci, ko samo pomislim na to).

No od takrat naprej, je bilo vse boljse. Tjas je bil star mesec in pol ko je prvic spoznal dojenje. Do takrat je bil hranjen le po cevki in dan pred operacijo, mu je sestra ponudila steklenicko. Zacel se je dojiti in kmalu za tem sva bila na letalu, cisto sama na poti v Christchurch. Moram reci, da me je bilo malo strah iti domov brez medicinskega osebja in brez monitorjev, sva pa prezivela polet v first class in se vrnila v domov.

Tjas je zacel rasti in se rediti zelo kmalu po prihodu domov. Aprila 1995 pa sem se ze tako opogumila, da sem ga celo odpeljala v Slovenijo, obiskati babico, dedka in strica ter ostale sorodnike.

Tjas je shodil z 11 meseci in je govoril tudi zelo kmalu, ceprav bolj tiho in hripavo. 

Ker vsi radi potujemo, tudi Tjas leta po svetu kar veliko. Do sedaj je bil naokoli sveta ze kar nekajkrat na poti v Slovenijo. Ponavadi nimamo problemov s potovanjem. Videli smo nekaj zabaviscnih parkov v Ameriki in Australiji, pa na Tajskem. Tjas je uzival na Hvaru 2002 and prezivel Novo Leto 2005/06 v Sloveniji.

Zdaj je star ze 11 let star in je kar priden v soli. Zadnji pregled pri kardiologih je imel lani in so zelo zadovoljni z njim. Tjas uziva v nogometu in je zelo hiter tekac na kratke proge. Tudi sah rad igra in seveda play station. Naucil se je tudi ze veliko slovenscine, kar ni najlaze, ko ni veliko Slovencev v Novi Zelandiji. Tjasijeva zgodba je napisana tudi v Knjigi The Heart of a Mother (editor Anna Jaworski).

Angleski del je napisal Darren, jaz pa ga nisem uspela prevesti dobesedno….

 

This is me now!!!!

Please click here for more Photos of our Family and Me

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Last updated MAY 2006

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