Yu pikin gɛt bɔku pan dɛn prɔblɛm ya togɛda? Lɛ wi tɔk bɔt VATER Syndrome / VACTERL Association!

Yu kin rili wɔri we di dɔktɔ dɛn tɛl yu se yu nyu pikin dɔn gɛt sɔm chenj ɔ bad tin dɛn wantɛm wantɛm na bɔku pat dɛn na in bɔdi. Sɔntɛm di skan dɛn we dɛn bin du bifo dɛn bɔn di pikin bin gi yu wan hint bɔt sɔntin lɛk dis. Dis na di kɔndishɔn we wi go tɔk bɔt tide, VATER Syndrome, ɔ VACTERL Association. Nɔ wɔri, lɛ wi ɔndastand dis simpul wan.

Wetin na VATER Syndrome / VACTERL Assosieshɔn?

Fɔ tɔk am simpul wan, VATER syndrome na wan grup we gɛt prɔblɛm dɛn we dɛn bɔn pikin we kin apin ali we di pikin de gro. spεshal wan, dεn prכblεm ya kin apin insay di fכs wik dεm we di pikin in εmbrayo de divεlכp. Di sik kin difrɛn frɔm wan pikin to ɔda wan. Nɔto ɔl pikin dɛn go gɛt di sem sayn dɛn. Dɔktɔ dɛn kin sɔprayz se di sik de we prɔblɛm de wit at le tri pan di pat dɛn na di bɔdi we dɛn kin yuz di lɛta dɛn we dɛn kɔl VATER.

Wetin dɛn lɛta ya VATER / VACTERL tinap fɔ?

Dis na rili akɔdin. Dat min se, na wɔd we dɛn mek bay we dɛn jɔyn di fɔs lɛta dɛn na di Inglish nem dɛn fɔ di bɔdi pat dɛn we dis sik afɛkt. Fɔs, dɛn bin de kɔl am VATER:

• V - Vεrbra : Dis min di sכm sכm bon dεm (vεrbra) na di spayna .
• A - Anus : Dat min di anus .
• T - Trachea : Dat min se di briz paip .
• E - Esophagus : Dat min se di it paip.
• R - Renal : Dis min se yu gɛt prɔblɛm wit yu kidni .

Leta, as dɛn kin si prɔblɛm dɛn na tu ɔda pat dɛn na di bɔdi wit dis kɔndishɔn, dɛn bin ɛkstɛnd di akɔdin smɔl to VACTERL:

• C - Cardiac : Dis min se prɔblɛm dɛn we gɛt fɔ du wit at .
• L - di limb dεm : dis de tכk bכt prכblεm dεm we de fכ di limb dεm (especially di radius bon na di sayd fכ di big tכ).

Yu ɔndastand wetin VACTERL min? Dis kɔndishɔn na we sɔm pan dɛn pat ya gɛt sɔm prɔblɛm dɛn di sem tɛm.

Udat dɛn kin afɛkt dis VACTERL kɔndishɔn?

VACTERL kin afɛkt ɛnibɔdi. I nɔto tin we pɔsin kin gɛt frɔm in mama ɛn papa. Dis min se bɔku tɛm, na wan pɔsin nɔmɔ na di famili i kin afɛkt. Pan ɔl we dɛn nɔ no yet di rayt tin we kin mek i apin, dɛn biliv se na bikɔs ɔf di tin dɛn we de apin na di bɔdi ɛn di tin dɛn we de apin na di say we i gɛt bɛlɛ.

We wi tink bɔt aw dis sik kin bɔku, i kin afɛkt lɛk wan pan ɛvri 10,000 to 40,000 pikin dɛn we dɛn jɔs bɔn. Bɔt dis nɔmba kin pas bikɔs sɔm pikin dɛn kin gɛt sɔm kayn sik dɛn we nɔ kin rili klia, ɔ na sɔm sayn dɛn nɔmɔ.

Wetin na di sayn dɛm fɔ VACTERL syndrome?

Dɛn kin si di sayn dɛm mɔ na di bɔdi pat dɛm we dɛn ripresent wit di lɛta dɛm VACTERL we wi bin dɔn tɔk bɔt bifo tɛm. Sɔm pan dɛn sayn ya kin si we dɛn bɔn am (congenital) , ɛn ɔda wan dɛn kin apin leta. Dɛn sayn ya kin difrɛn frɔm wan pikin to ɔda wan. Naw lɛ wi luk ɛni wan pan dɛn pat ya we gɛt fɔ du wit ɛni pat.

Spine (Vertebrae) Prɔblɛm dɛn

Di spayna na wan pat we rili impɔtant na wi bɔdi. insay VACTERL, sכm chenj kin de na di we aw dis spayna de divεlכp.

• di kכva fכ di spayna to wan sayd ( scoliosis ).
• di mכlfכmeshכn fכ di vεrbra dεm (spine) (e.g., hεmivεrbra dεm , fכs vεrbra dεm ).
• Lɔs fɔ di telbon.
• di abnכmaliti dεm na di rib dεm (di rib dεm we nכ de, fכ gεt εkstra rib, rib dεm we stכk togeda כ split).

Imajin aw sɔntin lɛk dis go afɛkt di we aw pikin de tinap ɛn muv we i apin to in spayna.

Anal (Anus) Prɔblɛm dɛn

Sɔm pikin dɛn we gɛt dis sik nɔ kin gɛt wan anus we dɔn ful-ɔp. Dis min se di opin we di stɔl de kɔmɔt kin rili smɔl ɔ i kin de na di rɔng ples. Dɛn kin kɔl dis bak anal atresia . Dis kin mek i nɔ izi fɔ mek di pikin gɛt bɔdi.

Prɔblɛm dɛn we gɛt fɔ du wit di at

At prɔblɛm kin rili siriɔs. Insay VACTERL, difrɛn prɔblɛm kin de wit di we aw di at de mek ɛn aw i de wok.

• di men bכdi vεsul dεm (aorta εn pulmonary artery) de displace.
• di ol dεm bitwin di atria dεm na di at ( atrial septal defects (ASD) ).
• Fast at bit ( tachycardia ).
• At we nɔ de wok fayn.
• כnda divεlכpmεnt fכ di lεft hat chεmba ( hypoplastic left heart syndrome ).
• Fɔ blo kwik kwik wan ɛn/ɔ di chɛst tayt.
• Kɔmpleks at sik dɛn lɛk Tetralogy of Fallot .
• di ol dεm bitwin di chεmba dεm na di at ( vεntrikulכr septal dεfεkt (VSD) ).

Sɔm pan dɛn at sik ya kin mek pɔsin in layf de pan denja. Bɔt sɔm ol dɛn lɛk ASD ɛn VSD kin lɔk dɛnsɛf as tɛm de go.

Trakya ɛn Ɛsophagus Prɔblɛm dɛn

wan pan di kכmכn kכndyushכn dεm we dεn kin si pan VACTERL na dat di trakya εn εsophagus nכ kכnεkt usay dεn fכ de (Fistula we de na di trakiɔɛsofagial. כ, di εsophagus nכ de kכnekt fayn wit di bεlε ( esophageal atresia ). Dis na bikɔs:

• I nɔ izi fɔ drink milk ɛn it.
• Infεkshכn dεm na di rεspiretכri trakt (e.g. nyumonia ).
• I nɔ izi fɔ swɛla.
• I kin at fɔ blo.

Jɔs tink se if di it paip ɛn di paip we yu de blo nɔ de alaynɛd, it ɛn drink kin go insay di lɔng, nɔto so? Dat na tin we denja.

Prɔblɛm dɛn we de na di rεnal

yu kin si prכblεm na di kidni εn urinary sistεm bak pan dis kכndyushכn.

• abnכmal lכkεshכn fכ di urethral opin (especially in bכy pikin dεm - Hypospadias ).
• di kidni dεm we nכ de divεlכp fayn ( renal dysplasia ).
• Kidni dɛn we de na di rɔng ples ( renal ectopia ).
• di urine we de fכlכ bak frכm di blad to di kidni dεm ( vesicoureteral reflux ).
• di akyumyuleshכn fכ di urine na di kidni dεm ( Hydronephrosis ).
• Infεkshכn dεm na di urinary tract כltεm.

Limbs & Radius Prɔblɛm dɛn

insay VACTERL, yu kin si prכblεm na di limb dεm, spεshal wan na di rayus bon na di big tכ sayd na di an.

• di rayus bon kכmplit lכs ( radial aplasia ).
• raydial haypoplasia ( כnda divεlכpmεnt fכ di rayus bon).
• Lɔs fɔ di big tɔ.
• fכ gεt εkstra bon na di big tכ (Triphalangeal thumb ).

pan tap dat, yu kin si כda prכblεm dεm bak na כda limb dεm (apat frכm di rayus bon):

• Wan difɔmiti na di anklɛ ( klabfut ).
• Nɔ ebul fɔ yuz sɔm finga dɛn fayn fayn wan, bikɔs i smɔl ( hypoplasia ).
• Fɔ gɛt ɛkstra finga dɛn ( polydactyly ).
• fכs fכ di tu bon dεm na di fכs an ( radioulnar synostosis ).
• di finga dεm de stכk tכgeda (lεk wan mεmbran - sindaktili ).

Ɔda sayn dɛm wae yu kin si apat frɔm di nem VACTERL

Apat frɔm di pat dɛn we dɛn kin kɔl wit di lɛta dɛn VACTERL, yu kin si sɔm ɔda kwaliti dɛn bak pan dɛn pikin ya.

• Di shep we nɔmal fɔ di yes dɛn.
• Asimɛtri fɔ ɔl tu di say dɛn na di fes.
• I nɔ izi fɔ blo tru di nos ( choanal atresia ).
• di spεnal kכd de trכp na wan ples (tethered spinal cord ).
• Di grow slo pas aw i fɔ gro.
• Omphalocele (we di intestin dεm de kכmכt na do na di bכdi).
• Narrowing of di vois box/ larynx .

Impɔtant: Nɔto ɔl dɛn kwaliti ya de pan ɔl pikin. Sɔm pikin dɛn kin gɛt smɔl pan dɛn. Dɔn bak, ivin di sem kwaliti kin difrɛn pan wan pikin pas ɔda wan.

Wetin na di rizin fɔ di fɔmɛshɔn fɔ di VACTERL kɔllɛkshɔn?

Infakt, dɛn nɔ dɔn fɛn di rayt tin we kin mek pɔsin gɛt VACTERL syndrome yet. Dɛn stil de du risach bɔt dis. כltu, di opinion naw na se dis kכndyushכn kin kכz f כ di kכmbaynshכn fכ sεvεra jεnεtik εn invayroment fכs tin dεm we de afekt di divεlכpmεnt fכ di pikin we di bεlε de bigin. Dat min se, sɔntɛm nɔto wan kɔz de, bɔt sɔm kɔz dɛn de togɛda.

Aw fɔ no di VACTERL kɔlɛkshɔn?

Dɛn kin no se di sik we dɛn kɔl VACTERL syndrome we dɛn de du ɛgzam bifo dɛn bɔn pikin ɔ we dɛn bigin fɔ bɔn pikin. Bɔt sɔntɛnde, di sayn dɛm nɔr kin so klia, so dɛn kin no am wae dɛn smɔl ɔr ivin yɔŋ.

VACTERL syndrome na "diagnosis of exclusion." Dis min se dɔktɔ dɛn kin fɔs pul ɔl di ɔda sik ɛn kɔndishɔn dɛn we kin mek pɔsin gɛt di sem kayn sik. Na we dɛn nɔ fɛn ɛni wan pan dɛn kɔndishɔn ya, dɛn kin tek VACTERL as pɔsibul kɔz.

Fɔs, dɔktɔ go du wan kɔmplit ɛgzam fɔ di bɔdi. dis go chεk fכ bכn difεkt dεm na at le wan pan di bכdi pat dεm we dεn spεl wit di lεta dεm VACTERL we wi bin dכn tכk bכt. Bɔku tɛm, pikin we gɛt VACTERL go gɛt dɛn prɔblɛm ya na at le tri pat dɛn na in bɔdi .

Afta di fyzikal egzamin, di dɔktɔ go ɔda fɔ mek dɛn du ɔda tɛst (e.g. X-ray , ultrasounds , blood test). Dɛn kin du dɛn tin ya fɔ no ɛni prɔblɛm we go mek pɔsin in layf de pan denja, mɔ di wan dɛn we de na di at ɛn di kidni, so dat dɛn go ebul fɔ trit dɛn kwik kwik wan.

Wetin na di tritmɛnt dɛm fɔ VACTERL syndrome?

we dεn de trit VACTERL sεndrכm, di mεn fכs na fכ ridyus di simptom dεm we dεn kin kכz fכ dεn malfכmeshכn dεm ya na di bכdi we di εmbrayo stej de. Di we aw dɛn kin trit dɛn kin difrɛn frɔm wan pikin to ɔda wan. Dis na bikɔs nɔto ɔl pikin dɛn gɛt di sem prɔblɛm. Di men tritmɛnt dɛn na:

• Ɔpreshɔn: Dɛn nid ɔpreshɔn fɔ kɔrɛkt dɛn bad bad tin ya. Sɔntɛnde, dɛn kin du dis ɔpreshɔn insay sɔm dez afta dɛn bɔn di pikin, bifo big big prɔblɛm dɛn apin. As di pikin de gro, i kin nid fɔ du mɔ ɔpreshɔn.
• Fizik tritmɛnt ɔ ɔkupeshɔn tɛrapi: Dɛn tritmɛnt ya kin ɛp fɔ mek di mɔsul dɛn strɔng ɛn mek di jɔyn dɛn muv fayn fayn wan.
• Mɛrɛsin: Dɛn kin gi difrɛn kayn mɛrɛsin fɔ kɔntrol ɛn ridyus di sayn dɛm.

Aw yu kin kia fɔ pikin we gɛt VACTERL syndrome?

Fɔ no se yu pikin gɛt VACTERL syndrome kin bi tranga ɛkspiriɛns. Bɔt mɛmba se nɔto yu wangren de. Yu pikin go nid fɔ kɔntinyu fɔ kia fɔ yu pikin ɛn fɔ wach am fɔ mek i ebul fɔ kɔntrol di sik dɛn we i gɛt ɔlsay na in layf.

As di pɔsin we de kia fɔ di pikin, yu gɛt big wok fɔ du.

• Yu fɔ no ɔltɛm bɔt aw yu pikin gɛt wɛlbɔdi ɛn aw i de gro. Chek fɔ si if yu pikin de rich di divɛlɔpmɛnt maylston dɛm we fit in ej (e.g., fɔ ol in ed, fɔ rɔl oba, sidɔm, waka).
• Stay in kɔntakt wit di dɔktɔ dɛn we de trit yu pikin. Pikin we gɛt VACTERL kin nid di ɛp frɔm sɔm spɛshal pipul dɛn (e.g., dɔktɔ we de mɛn pikin dɛn, dɔktɔ we de mɛn dɛn at, dɔktɔ we de mɛn pipul dɛn, dɔktɔ we de mɛn dɛn bɔdi). Mek una gɛt gud padi biznɛs wit dɛn ɔl.
• Sɔm famili dɛn kin si se fɔ advays dɛn bɔt dɛn jɛnɛtiks kin rili ɛp dɛn. I kin ɛp dɛn fɔ no mɔ bɔt dɛn pikin in sik, tɔk bɔt aw fɔ trit dɛn, ɛn gɛt di maynd trɛnk we dɛn nid fɔ bia wit dis prɔblɛm.

Yu tink se dɛn kin ebul fɔ avɔyd di sik we dɛn kɔl VACTERL syndrome?

Bikɔs dɛn nɔ no yet di rayt tin we kin mek pɔsin gɛt VACTERL syndrome, no we nɔ de fɔ mek i nɔ apin. Risach de go bifo fɔ no wetin kin mek i gɛt dis sik ɛn us risk factors de pan nyu mama ɛn papa.

Us kayn tin wae pɔrsin wae gɛt VACTERL syndrome kin gɛt?

We yu gɛt bɛlɛ, tɔk to yu dɔktɔ bɔt aw yu ɛn yu pikin go gɛt wɛlbɔdi. di jεnεtik tεst εn di kia we dεn de kia fכ di pikin bifo i bכn kin no sכm VACTERL trayt dεm bifo dεn bכn yu pikin. Dɔn dɔktɔ dɛn kin rɛdi fɔ bigin tritmɛnt jɔs afta dɛn bɔn yu pikin.

Afta di pikin dɔn bɔn, di dɔktɔ dɛn kin chɛk fɔs fɔ si if di pikin gɛt wɛlbɔdi fɔ trit ɛni sik we go mek i day. Dɛn kin nid fɔ gɛt tritmɛnt ɔlsay na yu layf, bikɔs nyu sayn dɛm kin kam ɔr ol sik kin chenj wae yu smɔl ɛn wae yu de yɔŋ.

Nɔr mɛrɛsin nɔr de fɔ VACTERL syndrome. Bɔt if dɛn trit di pikin fayn ɛn mɛn am, dɛn go ebul fɔ ɛp am fɔ liv fayn layf.

Ustɛm yu fɔ go to dɔktɔ?

If yu pikin gɛt sayn dɛm fɔ VACTERL ɛn dɛn de ambɔg dɛn ɛvride wok ɔ divɛlɔpmɛnt, mek shɔ se yu go to dɔktɔ.

Ustɛm fɔ go na di imejensi rum:

• If di pikin in at nɔ de bit ɔltɛm.
• If yu nɔ de it tin ɔ drink milk.
• If yu gɛt prɔblɛm fɔ blo.
• If yu nɔ ebul fɔ pul dɔti ɔ pis.

Insay dis kayn tin, nɔ delay ivin smɔl.

Us kwɛstyɔn dɛn yu fɔ aks yu dɔktɔ?

Na nɔmal tin fɔ gɛt bɔku kwɛstyɔn dɛn we yu lan bɔt yu pikin in kɔndishɔn. Nɔ fred fɔ aks yu dɔktɔ ɔl wetin yu ebul. Na sɔm ɛgzampul dɛn ya:

• Yu tink se dɛn nid fɔ du ɔpreshɔn pan mi pikin?
• Wetin na di sayd ɛfɛkt dɛm fɔ di tritmɛnt dɛm we yu kin advays?
• Wetin a fɔ du if mi pikin nɔ de rich di divɛlɔpmɛnt maylston dɛn?
• Aw fɔ kia fɔ pikin we dɛn jɔs bɔn afta dɛn dɔn du am ɔpreshɔn?

Apat frɔm dɛn kwɛstyɔn ya, aks ɛnitin we yu gɛt na yu maynd. Di dɔktɔ dɛn de ya fɔ ɛp yu.

Fɔ dɔn, tin dɛn we wi fɔ mɛmba

Nyu bɔn pikin dɛn gɛt bɔku prɔblɛm dɛn we dɛn bɔn, so i nɔmal fɔ fil strɛs we yu kam fɔ no se yu nɔ go ebul fɔ kɛr yu pikin go na os kwik kwik wan. Bɔt mɛmba se wan tim we gɛt spɛshal dɔktɔ dɛn go du dɛn bɛst fɔ gi yu pikin di tritmɛnt we i nid ɛn fɔ pul ɛni sik we go mek i day.

Bɔrku mama ɛn papa ɛn pipul dɛm wae de kia fɔ dɛn kin gɛt bɔrku kɔmfɔt ɛn no bɔt savis dɛm lɛk jenɛtik kɔyl afta dɛn dɔn no se dɛn gɛt VACTERL syndrome. So, nɔ shem fɔ aks fɔ ɛp frɔm dis kayn savis. If yu gɛt di rayt mɛrɛsin, lɔv, ɛn kia fɔ yu, yu go mɔs ɛp yu fɔ liv di bɛst layf.

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