Yu smɔl pikin in rayt say na in at nɔ de divɛlɔp fayn? (Haypoplastik Rayt At Sindrom) .

Wetin yu go du if dɛn bɔn yu smɔl pikin wit at prɔblɛm? Imajin aw dat go mek yu at pwɛl. Sɔm pikin dɛn kin bɔn wit di rayt say na dɛn at we nɔ de divɛlɔp fayn. Dɔktɔ dɛn kɔl dis Hypoplastic Right Heart Syndrome. Dis kin mek di pikin nɔ gɛt bɔku ɔksijɛn. Lɛ wi tɔk mɔ bɔt dis, nɔto so?

Wetin na Hypoplastic Rayt At Sindrom?

Fɔ tɔk am simpul wan, Hypoplastic Right Heart Syndrome na wan at sik we nɔ kin apin so ɔltɛm we dɛn kin bɔn sɔm pikin dɛn wit . wetin kin apin pan dis na dat sכm pat dεm na di rayt say na di pikin in at nכ de divεlכp ful wan. Tink bɔt am lɛk smɔl pɔmp. di rayt say na di at na in de tek di bכdi we nכ gεt כksijεn na di bכdi εn sεnd am to di lכng dεm fכ gεt כksijεn. So, if dis rayt say nɔ de divɛlɔp fayn, i nɔ go du in wok fayn.

If yu gɛt dis sik, dɛn pat ya na di at kin afɛkt:

• trikuspid valv: dis lεk get bitwin di rayt atria εn di rayt vεntrikl na di at. We i nɔ de wok fayn, i kin mek di blɔd nɔ flɔ.
• di pulmonari valv: Dis na di valv usay di pulmonari at we de kכri bכdi frכm di rayt vεntrikl to di lכng dεm de bigin.
• Rayt vεntrikl: Dis na di men bכdi we de pכmp na di rayt say na di at. If i smɔl, i go pɔmp smɔl blɔd.
• di pulmonari atεri: Dis na di big at we de kכri bכdi frכm di rayt vεntrikl to di lכng.

Dipכnt pan aw di sik kin tranga כ sכmtεm, di wok we dεn pat dεm na di at kin du kin rεdכks כ inkrεs.

Sɔntɛnde, pikin dɛn we gɛt HRHS kin gɛt ɔda at prɔblɛm dɛn bak. Fɔ ɛgzampul:

• atrial septal defect (ASD): Na ol na di wכl bitwin di tu כp chεmba dεm (atria) na di at.
• vεntrikul septal dεfekt (VSD): Na ol na di wכl bitwin di tu lכw chεmba dεm (vεntrikul dεm) na di at.
• Atrioventricular canal defect: Na big ol na di midul pan di at wit sɔm ɔda prɔblɛm dɛn.

Aw siriɔs dis tin de apin?

Hypoplastic right heart syndrome (HRHS) kin siriɔs fɔ sɔm pipul dɛm pas ɔda pipul dɛm . Pipul wae gɛt siriɔs sik, lɛk wae ɔksijɛn nɔr kin bɔrku , nid tritmɛnt kwik kwik wan . Bɔt sɔm pipul dɛn nɔ kin gɛt am lɛk aw i kin gɛt am, ɛn na smɔl prɔblɛm dɛn nɔmɔ kin gɛt. Sɔntɛm dɛn nɔ kin no bɔt dɛn kayn sik ya te dɛn dɔn ol.

Aw dis sik kin kɔmɔn?

Dis na tin we nɔ kin apin so ɔltɛm.Risach pipul dɛn se nɔto 50,000 pipul dɛn na Amɛrika gɛt HRHS. I nɔ kin bɔku pas Hypoplastic Left Heart Syndrome, we na wan sik we di lɛft say na di at nɔ kin divɛlɔp fayn.

Wetin na di sayn dɛm wae de sho se yu gɛt haypoplastik rayt hat sindrom (HRHS)?

Dɛn tin ya na di sayn dɛm fɔ dis sik:

• Blu diskɔlɔreshɔn na di skin na di an ɛn fut. Dɛn kɔl dis saynosis . I min se di bɔdi nɔ de gɛt bɛtɛ ɔksijɛn.
• I nɔ kin izi fɔ yu fɔ blo. Dɛn kɔl dis dispnɛa .
• Fɔ blo kwik kwik wan. Dɛn kɔl dis takypnea .
• Di pikin nɔ de drink milk fayn.
• Fɔ taya kwik kwik wan, fɔ fil slip ɔltɛm.

If yu pikin gɛt wan ɔ mɔ pan dɛn sik ya, i go fayn fɔ mek yu go to dɔktɔ wantɛm wantɛm.

Wetin kin mek dis apin?

Infakt, dɛn nɔ dɔn no yet di rayt tin we kin mek pɔsin gɛt di sik we dɛn kɔl hypoplastic right heart syndrome (HRHS) .

Bɔt di wan dɛn we de stɔdi bɔt dis biliv se di jenɛtiks kin involv , bikɔs dɛn dɔn ripɔt se sɔm pipul dɛn na di sem famili gɛt HRHS we dɛn bɔn dɛn. So, wi nid fɔ du mɔ risach.

Us ɔda prɔblɛm dɛn dis kin mek pɔsin gɛt?

Hypoplastic Right Heart Syndrome (HRHS) kin mek yu gɛt prɔblɛm dɛn lɛk:

• Di ɔksijɛn lɛvɛl we smɔl na di bɔdi. Dɛn kɔl dis haypoxemia .
• Rayt-sayd at we nɔ de wok fayn.
• Di at we nɔ de bit ɔltɛm. Dɛn kɔl dis aritmia .

we dεn yכng, ivin fכ dεn wan dεm we HRHS nכ de afekt so bad bad wan, bכdi kin kכmכt biכs di כksijεn lεvεl dεm na di bכdi lכw.

Aw dɛn kin no dis sik?

sכmtεm, hεlth kεriכn kin no HRHS we di pikin stil de na di bεlε (fetal divεlכpmεnt) . Dɛn kin yuz ɔltra saund skan fɔ si di pikin in at. If yu want fɔ luk gud wan, yu kin du bak wan fetal ɛkokadiogram . Dɛn tu tɛst ya nɔ de ambɔg pɔsin.

Us tɛst dɛn kin du afta dɛn bɔn di pikin?

afta dεn bכn di pikin, dεn kin du dεn tεst ya we nכ de invayv fכ no if di pikin gεt HRHS:

• Pulse oximeter (pulse ox): Dis na smɔl tin we tan lɛk klip we de mɛzhɔ di ɔksijɛn lɛvɛl bay we i tay am na yu finga ɔ yu yes.
• Ilɛktrokardiogram (EKG/ECG): Na tɛst we de sho aw di at de wok wit ilɛktrik.
• Echocardiogram (Echocardiogram - echo): Dis na tɛst we dɛn kin yuz sawnd wev, we fiba ɔltra saund, fɔ tek pikchɔ fɔ di at. I kin sho aw di at tan, aw di valv dɛn de wok, ɛn aw blɔd de flɔ.
• Hat MRI (Magnetic Resonance Imaging): I de yuz magnɛtik fil ɛn redio wev fɔ mek di at pikchɔ dɛn we de na di at.

Wetin na di tritmɛnt dɛm fɔ dis?

Di tritmɛnt fɔ di haypoplastik rayt hat sindrom (HRHS) kin inklud mɛrɛsin, we nɔ kin tek bɔku tin, ɔ ɔpreshɔn . Di men gol fɔ ɔl dɛn tritmɛnt ya na fɔ ɛp di pikin in lɔng fɔ gɛt inof blɔd ɛn ɔksijɛn .

Mɛrɛsin

• dεn de yuz prostaglandin fכ εp fכ kip di pikin in ductus arteriosus opin. dis ductus arteriosus na tכb we di pikin de yuz fכ gεt כksijεn bכdi frכm di mama we i de insay di bεlε. as di pikin bigin fכ brith tru di lכng dεm afta dεn bכn am, dis tכb kin kכloz insay fכ de dεm. Bɔt pan pikin we gɛt HRHS, bikɔs di rayt say na di at nɔ de wok fayn, we yu kip dis tiub opin i de ɛp fɔ mek blɔd go na di lɔng dɛn.

Minimally invasive prosidur dɛm

• Dɔktɔ kin yuz wan tint tiub we dɛn kɔl kateta fɔ put stent (wan smɔl tiub we tan lɛk mɛtal mɛsh) insay di pikin in daktus arteriosus. Dis kin mek di dakt opin ɛn mek di blɔd go fayn fayn wan na di lɔng dɛn.
• Wan ɔda wan na we di pulmonari valv kin kɔmɔt . insay dis, dεn de pas wan kateshכn tru wan bכdi vεsεl insay di pulmonari valv we nכ de opin fayn, we de mek wan ol na di valv. Dis kin mek blɔd go insay di pulmonari at. Sɔm dɔktɔ dɛn kin yuz wan tin bak we dɛn kɔl ablation fɔ dis.

Ɔpreshɔn

Siriɔs kes dɛm fɔ HRHS nid ɔpreshɔn fɔ trit. Bɔku tɛm, dɛn kin du dɛn tin ya difrɛn difrɛn stej dɛn.

• Blalock-Taussig-Thomas (BTT) shunt: dεn kin yuz dis fכ mek di bכdi fכ fכlכ bak na di lכng dεm fכ pikin we gεt HRHS. i de yuz sεntetik fכ mek kכnεkshכn bitwin di sכbklavian at (wan at we de na di kכlabon) εn di pulmonari at.
• Afta sɔm mɔnt ɔ ia, dɔktɔ kin du wan Glɛn prɔsidyu ɛn/ɔ wan Fontan ɔpreshɔn . εvri wan pan dεn tin ya de mek nyu rod fכ mek bכdi fכ fכlכ rawnd di rayt vεntrikl we nכ de wok fayn. nכmal wan, di rayt vεntrikl de pכmp bכdi insay di pulmonari at.

di prכsidכm dεm we Glεn εn Fכntan de du de mek di bכdi fכ fכlכ dairekt frכm wan big vein insay di pulmonari at, frכm usay i de travul go na di lכng fכ pik כksijεn.

Ɛni kɔmplikeshɔn de pan di tritmɛnt?

Jɔs lɛk ɔl di ɔpreshɔn dɛn, sɔm prɔblɛm dɛn de we kin apin we dɛn trit dɛn ya. Di prɔblɛm dɛn kin difrɛn difrɛn wan bay di tritmɛnt. Fɔ ɛgzampul:

• Di stent kin muf frɔm usay i bin de fɔs.
• BTT shunt ɔpreshɔn kin mek di blɔd vesel dɛn smɔl ɔ pwɛl wan nɛv.
• di pulmonary valve perforation kin mek yu hat bit i nɔ de bit ɔltɛm (arrhythmia) ɔ i kin mek yu blɔd vesel pwɛl.
• Big big ɔpreshɔn kin mek yu blɔd prɛshɔn ay, yu pleura effusion, yu at kin stɔp, yu kin gɛt sik na yu kidni ɔ liva, ɔ yu at nɔ kin bit ɔltɛm.

Bɔt nɔ wɔri. Di dɔktɔ dɛn go tɛl yu bɔt ɔl dis ɛn tek di step dɛn we yu nid.

Aw lɔng i kin tek fɔ mek i wɛl?

Di tɛm fɔ wɛl kin difrɛn difrɛn wan fɔ di tritmɛnt. Big big ɔpreshɔn dɛn kin tek lɔng tɛm pas ɔl. Yu pikin kin de na ɔspitul fɔ sɔm dez, sɔntɛm i kin pas wan wik. Dɛn go nid fɔ wach dɛn gud gud wan afta dɛn dɔn go bak na dɛn os.

Wetin a go ɛkspɛkt if mi pikin gɛt dis kayn sik?

Bikɔs ɔf di ɔksijɛn lɛvɛl we nɔ bɔku na dɛn layf, pipul dɛn we gɛt haypoplastik rayt hat sindrom (HRHS) kin gɛt prɔblɛm dɛn lɛk:

• Langwej ishu dɛn.
• Di prɔblɛm dɛn we gɛt fɔ du wit mɛmori.
• Di risk fɔ gɛt at, liva, ɔ kidni sik kin bɔku we pɔsin dɔn ol.
• Dizayd wae de mɛk pɔrsin de fil ɔr wae pɔrsin de wɔri.
• I nɔ izi fɔ plan sɔntin ɔ fɔ sɔlv prɔblɛm.

Bɔt, masta sabi pipul dɛn de fɔ ɛp wit ɔl dis. So nɔ wɔri.

Wetin na di prɔgnosis fɔ dis kɔndishɔn?

I nɔ kin izi fɔ mek pipul dɛn we gɛt siriɔs haypoplastik rayt hat sindrom (HRHS) liv te dɛn big we dɛn nɔ gɛt ɔpreshɔn . Bɔt pipul dɛm wae gɛt HRHS nɔr kin ivin no se dɛn gɛt dis sik te dɛn big.

Aw yu kin tek kia ɔf pikin we gɛt HRHS?

Di kia we yu pikin nid go dipen pan aw in sik rili bad . If dɛn bin du ɔpreshɔn pan am jɔs afta dɛn bɔn am, dɛn go nid fɔ wach am gud gud wan afta i dɔn rich na os. Yu dɔktɔ ɔ midwayf go gi yu gud advays bɔt aw fɔ kia fɔ yu pikin.

Ustɛm yu nid fɔ go to dɔktɔ?

Bebi we dɛn dɔn ɔpreshɔn go nid fɔ go to dɔktɔ fɔ mek dɛn go fala am . Dɛn go tɛl yu wetin fɔ wach ɛn wetin fɔ tɛl di dɔktɔ wantɛm wantɛm if yu notis ɛnitin. If yu gɛt ɛni kwɛstyɔn ɔ wɔri bɔt yu pikin in kɔndishɔn, kɔl di dɔktɔ wantɛm wantɛm.

If yu pikin gɛt prɔblɛm fɔ lan ɔ fɔ kɔntrol aw i de fil, yu kin fɛn ɔda spɛshal pipul dɛn bak we go ɛp am pan dɛn tin dɛn de. Yu dɔktɔ go gi yu di advays we yu nid.

Us kwɛstyɔn dɛn a fɔ aks di dɔktɔ?

Na sɔm kwɛstyɔn dɛn we yu kin aks yu pikin in dɔktɔ:

• Yu tink se dɛn nid fɔ du ɔpreshɔn pan mi pikin?
• Aw kwik yu nid fɔ gɛt di ɔpreshɔn?
• Ɔmɔs ɔpreshɔn dɛn go nid fɔ du, ɛn ustɛm dɛn go du dɛn?
• Wetin na di lukin-grɔn fɔ mi pikin wit dis patikyula kɔndishɔn?

A ɔndastand aw i nɔ kin izi fɔ no se yu pikin gɛt at sik. Bɔt di pikin dɛn we dɛn kin bɔn tide kin gɛt tritmɛnt dɛn we di jɛnɛreshɔn dɛn we bin de trade nɔ bin de gɛt. Yu na di pɔsin we strɔng pas ɔlman we yu kin bi fɔ yu pikin dis tɛm. Lan bɔt HRHS. Aks yu dɔktɔ bɔt ɛnitin we nɔ klia. Tɔk to yu dɔktɔ fɔ disayd wetin bɛtɛ fɔ yu pikin.

Fɔ dɔn, mɛmba dis (Take-Home Message) .

Hypoplastic Right Heart Syndrome (HRHS) na wan sik we nɔ kin apin so ɔltɛm we dɛn kin bɔn pikin wit, usay di rayt say na di at nɔ kin divɛlɔp fayn. Dis kin mek di ɔksijɛn we di bɔdi de gɛt nɔ bɔku. If yu no di pikin kwik kwik wan ɛn gi am di rayt tritmɛnt (mɛrɛsin, smɔl ɔpreshɔn, ɔ big ɔpreshɔn) kin mek di pikin in layf bɛtɛ . We dis kayn tin apin, i rili impɔtant fɔ mek dɛn tɛl yu as mama ɔ papa ɛn wok togɛda wit yu dɔktɔ dɛn. Mɛmba se nɔto yu wangren de. Yu kin gɛt di ɛp we yu nid.

` Hypoplastic Rayt Hat Sindrom, HRHS, Infantil At Sik, Kɔnjɛnital At Difɛkt, Saynosis, Difikulti fɔ Brith, At Ɔpreshɔn