Yu smɔl pikin in lɛft at nɔ de divɛlɔp fayn? (Hypoplastic Left Heart Syndrome - HLHS) Lɛ wi tɔk bɔt dis!

Tide wi go tɔk bɔt wan at sik we kɔmplikt smɔl, ɛn we nɔ kin bɔku, bɔt we rili impɔtant. Dis na wan sik wae dɛn kɔl Hypoplastic Left Heart Syndrome , ɔ (HLHS) fɔ shɔt tɛm. Yu kin fil fred we yu yɛri dis, bɔt nɔ wɔri. Lɛ wi tɔk bɔt dis simpul wan, di we we yu go ɔndastand. Bikɔs, i rili impɔtant fɔ no bɔt tin dɛn lɛk dis.

Wetin na haypoplastik lɛft at sindrom (HLHS)?

Fɔ tɔk am simpul wan, (HLHS) na wan at sik we dɛn kin bɔn wit ɛn we kin de we dɛn bɔn am . insay dis, sכm pat dεm na di lεft say na di pikin in at nכ de divεlכp fayn. Tink bɔt am lɛk pɔmp. Di lɛft say na dis pɔmp na in de sɛn blɔd we gɛt ɔksijɛn to di wan ol bɔdi. So, we dis lɛft say nɔ de divɛlɔp fayn, prɔblɛm kin kam. insay dis kayn we, dεn pat dεm ya na di lεft say na di at kin mεntal afekt:

• di lεft vεntrikl : dis na di men chεmba we de na di lכw lεft say na di at. I de pɔmp blɔd we gɛt ɔksijɛn insay di aorta . Insay HLHS, bɔku tɛm i kin tu smɔl fɔ mek i ebul fɔ wok fayn fayn wan.
• Aorta : Dis na di big blɔd vesel na wi bɔdi. I kin kɛr blɔd kɔmɔt na di at to di wan ol bɔdi. Insay (HLHS), dis sɛf nɔ kin divɛlɔp fayn fayn wan.
• Mitral ɛn aortic valv dɛn: Dɛn tin ya tan lɛk domɔt. Dɛn kin jɔs alaw blɔd fɔ flɔ na wan say. di aorta valv de mek di bכdi fכ fכm frכm di lεft vεntrikl go insay di aorta. di mitral valv de alaw bכdi fכ fכlכ frכm di כp chεmba (atrium) na di lεft say na di at to di lכw chεmba (mitral valv). Insay HLHS, dis valv nɔ kin wok fayn ɔ i kin tu smɔl.

sכmtεm, pikin dεm we gεt HLHS kin gεt sכmכl ol na di wכl bitwin di tu כp chεmba dεm na di at (atrial septal defect) . Nɔmal wan, dis fɔ bi tik wɔl.

Wetin na di difrɛns bitwin nɔmal at ɛn at we gɛt (HLHS)?

Wi nɔmal at gɛt tu say. di rayt say de pכmp di bכdi we nכ gεt כksijεn frכm di bכdi to di lכng dεm fכ kכlekt כksijεn. Dɔn, di blɔd we gɛt ɔksijɛn kin go na di lɛft say ɛn dɛn kin pɔmp am to di ɔda pat dɛn na di bɔdi. Bɔt pan pikin we gɛt HLHS, di lɛft say na di at kin so smɔl dat i nɔ kin ebul fɔ pɔmp inof blɔd to di ɔda pat dɛn na di bɔdi. Dɔn, di rayt ventricle de tek ova. I de tray fɔ pɔmp blɔd to di lɔng dɛn ɛn di ɔda pat dɛn na di bɔdi. dis kin bi tru di ductus arteriosus.Tru wan spɛshal blɔd vesel we dɛn kɔl di ductus arteriosus. dis (ductus arteriosus) na bכdi we εvri pikin gεt na di bכdi. I kin lɔk sɔm dez afta dɛn bɔn am. Bɔt pan pikin we gɛt (HLHS), if dis blɔd vesel lɔk, if dɛn nɔ trit am, i kin mek i day. Bikɔs di lɛft say nɔ de wok, di wangren we fɔ mek blɔd go na di bɔdi na we i de blok.

Aw kɔmɔn tin (HLHS)?

(HLHS) na wan sik we nɔ kin apin so ɔltɛm. Statistikin na Amɛrika sho se i kin afɛkt lɛk wan pan ɛvri 3,800 pikin dɛn we dɛn kin bɔn ɛvri ia. (HLHS) de mek bitwin 2% ɛn 3% pan ɔl di at sik dɛn we dɛn kin bɔn wit (CHD). I kin apin mɔ pan bɔy pikin dɛn pas gyal pikin dɛn.

Wetin na di sayn dɛm fɔ pikin we gɛt (HLHS)?

Di sayn dɛm fɔ pikin we gɛt (HLHS) nɔ kin apin wantɛm wantɛm. Dɛn kin apia insay sɔm awa ɔr dez afta dɛn bɔn am. Di men sayn dɛm wae de sho se yu gɛt dis sik na:

• Saynosis : Na bluish-grey kɔlɔ we de na di skin, lip, ɛn finga nel. dis kin sho lεk greysh kכla pan bebi dεm we gεt dak skin. I kin tan lɛk blu kɔlɔ pan bebi dɛn we gɛt layt skin. Dis kin bi bikɔs di bɔdi nɔ de gɛt bɛtɛ ɔksijɛn.
• I at fɔ blo : Di pikin kin fil lɛk se i at fɔ blo.
• I nɔ kin izi fɔ drink milk: Di pikin nɔ kin want fɔ drink milk, ɔ i kin spit we i de drink milk.
• Letargy : di pikin kin tan lɛk se i de slip ɛn i kin taya.
• At bit kwik kwik wan.
• Swet , klem skin, ɔ fil kol.
• Wik puls .

If yu notis ɛni wan pan dɛn sayn ya, i impɔtant fɔ go to dɔktɔ wantɛm wantɛm. Nɔ panik, bɔt du sɔntin kwik kwik wan.

Wetin na di tin dɛm wae kin mek pɔrsin gɛt (HLHS)?

Bɔrku tɛm, nɔr patikyula kɔz nɔr de fɔ HLHS. Sɔntɛnde, i kin bi bikɔs ɔf di tin dɛn we de na di bɔdi . di pikin dεm we gεt sכm jin mכtεshכn , lεk GJA1 כ NKX2-5, kin gεt bכku risk fכ divεlכp HLHS. כlso, pikin dεm we gεt sכm jεnεtik kכndyushכn, lεk Turner syndrome כ Trisomy 18, kin gεt HLHS.

Aw dɛn kin no HLHS?

Dɔktɔ dɛn kin no HLHS wit nɔ-invasiv imej tɛst. dis kin bi we uman bεlε כ afta dεn bכn di pikin. We uman gɛt bɛlɛ:

• Prenatal ultrasound : Dis na skan we dεn kin du we uman bεlε.
• Fetal echocardiogram: Dis na spɛshal skan we kin chɛk fɔ si if i gɛt at prɔblɛm we di pikin stil de na di bɛlɛ.

Afta dɛn bɔn di pikin: Dɔktɔ dɛn kin no di sik bay we dɛn de wach di sayn dɛm ɛn luk di tɛst rizɔlt. Sɔntɛnde, we yu de lisin to di pikin in at wit stetɔskɔp, yu kin yɛri in at de grɔmbul . Dis min se di blɔd nɔ de flɔ fayn.

Us tɛst dɛn kin yuz fɔ no di sik (HLHS)?

• εks-ray na di chεst: Dis kin chεk di sayz εn shep fכ di pikin in at εn in lכng.
• Echocardiogram: Dis na ɔltra saund tɛst bak. di strכkchכ dεm we de insay di at kin si klia wan.
• Ilɛktrokardiogram (EKG/ ECG ): Dɛn kin yuz dis fɔ no di chenj dɛn we kin apin na di ilɛktrik we di at de bit.
• Pulse oximetry screening: Dis kin no di amount of oksijen na di pikin in blɔd.

Tritmɛnt de fɔ (HLHS)?

Yɛs, tritmɛnt dɛn de. Fɔs, dɛn nid fɔ gi di pikin wan mɛrɛsin we dɛn kɔl prostaglandin . dis de mek di ductus arteriosus opin. Dis kin mek wan rod fɔ mek blɔd go na di bɔdi. Apat frɔm dat, dɛn kin gi am ɔda mɛrɛsin dɛn fɔ ɛp di pikin in at fɔ wok fayn fayn wan. I kin nid bak fɔ ɛp di pikin fɔ blo. Dɔn, dɛn kin du bɔku ɔpreshɔn dɛn . Dɛn kin yuz dɛn ɔpreshɔn ya fɔ mek di blɔd go bak na di lɔng ɛn bɔdi. afta dεn כpεrayshכn dεm ya, di wok we di at de du kin kכlכsכl to di rayt vεntrikl. Na di wan we de pɔmp blɔd to di wan ol bɔdi.

Us ɔpreshɔn dɛn kin du fɔ (HLHS)?

Di dɔktɔ dɛn we de du ɔpreshɔn kin du tri men tin dɛn: di we aw dɛn kin du am na Nɔwud , di we aw dɛn kin du di wok na Glɛn , ɛn di we aw dɛn kin du di wok na Fontan . Dɛn kin du dɛn tin ya di we aw dɛn de du am. 1. Norwood prosidur: dεn kin du dis prosidכs insay di fכs tu wiks fכ di pikin dεm we gεt HLHS. Insay dis prosidur, di dɔktɔ dɛn we de du ɔpreshɔn:

• di pikin in aorta we nכ de divεlכp dεn de shep am bak fכ alaw bכdi fכ fכlכ to di bכdi.
• Dɛn kin put shunt , we na smɔl tiub fɔ mek di blɔd kɔmɔt na di rayt ventricle, ilɛksɛf na frɔm di aorta, to di pulmonary arteries we de go na di lungs.
• i de mek wan kכnεkshכn bitwin di כp chεmba dεm (atria) na di at. Dis kin ɛp fɔ gi di bɔdi blɔd we gɛt bɔku ɔksijɛn frɔm di lɔng dɛn.

2. Baydayrɛkshɔn Glɛn shunt ɔpreshɔn: Fɔ di pikinDi sɛkɔn ɔpreshɔn fɔ bi lɛk 4 to 6 mɔnt. We dɛn bin de du di ɔpreshɔn na Glɛn:

• Dɛn de pul di ol shunt.
• dεn put nyu shunt εn i de kכnekt di pikin in supεriכr vena cava (SVC) (we de kכri bכdi we nכ gεt כksijεn frכm di כp bכdi to di at) to di pulmonari at.
• dis shunt de ridyus di lod na di rayt vεntrikl, biכs i de alaw bכdi fכ go dayrekt to di lכng dεm.

3. Fontan prosidur: dεn kin du di las prosidכs bitwin di ej dεm fכ 18 mכnt εn 4 ia . Dis we aw dɛn kin du am kin mek ɔl di blɔd we de kam bak frɔm di bɔdi to di lɔng dɛn, ɛn i kin pas di at. Durin di Fontan prosidur:

• di pikin in infεriכs vena cava (IVC) (we de kכri bכdi we nכ gεt כksijεn frכm di lכw bכdi to di at) de kכnekt to di pulmonari at.

Ɛni kɔmplikeshɔn de pan di tritmɛnt?

Yɛs, sɔm bebi dɛn kin ivin lɔs dɛn layf we dɛn de go frɔm wan ɔpreshɔn to ɔda ɔpreshɔn. Dɔn bak, sɔm prɔblɛm dɛn kin de afta ɛni ɔpreshɔn. Fɔ ɛgzampul:

• Prɔblɛm wit di rayt ventricle we nɔ de wok fayn.
• Aorta valv de lik.
• Liva sik.
• Di at ritm dɛn we nɔmal.
• Blɔd we de klɔt.
• Sik we de prɛd.
• I nɔ izi fɔ it.
• Di sik dɛn we kin mek pɔsin sik.
• Prɔblɛm dɛn na di kidni.
• Di at we de mek di at nɔ de wok.

Dɛn tin ya kin mek yu fred fɔ yɛri, bɔt dɔktɔ dɛn go tɔk to yu bɔt dɛn prɔblɛm ya ɛn tray fɔ gi yu di bɛst tritmɛnt we pɔsin kin gɛt.

Yu tink se fɔ transplant at na fayn tritmɛnt?

Sɔntɛnde, dɔktɔ dɛn we de du ɔpreshɔn kin se dɛn fɔ transplant in at bifo dɛn du dɛn tri ɔpreshɔn dɛn de. Bɔt di pikin dɛn we dɛn dɔn transplant dɛn at go gɛt fɔ tek mɛrɛsin (immune suppressant drugs) fɔ di res ɔf dɛn layf.

Yu tink se dɛn kin trit HLHS bifo dɛn bɔn am?

Naw i nɔ pɔsibul fɔ mɛn HLHS ɔltogɛda bay ɔpreshɔn we dɛn gɛt bɛlɛ. כltu, sכmtεm di fetal sכja dεn kin du sכm intavεnshכn dεm fכ mek sכm pan di bad bad tin dεm we kin apin pan pikin we de divεlכp wit HLHS (e.g., wan sכm aorta valv). Bɔt dis kin apin nɔmɔ pan rili spɛshal kes dɛn.

Yu tink se dɛn kin ridyus di risk fɔ (HLHS)?

Bikɔs wi nɔ no wetin kin mek bɔku pipul dɛn gɛt HLHS, i nɔ kin izi fɔ tɔk aw fɔ mek dɛn nɔ gɛt am kpatakpata. Bɔt i impɔtant ɔltɛm fɔ fala di wɛlbɔdi abit dɛn we yu gɛt bɛlɛ:

• Nɔ fɔ drink rɔm ɛn fɔ smok.
• Fɔ kɔntrol ɔda mɛrɛsin dɛn lɛk Dayabitis Mɛlitɔs .
• Fɔ it tin dɛn we gɛt wɛlbɔdi.
• Fɔ tek wan vaytamɛn bifo yu bɔn we gɛt at le 400 maykrogram (400 mcg) fɔlik asid ɛvride .

If yu ɔ yu patna gɛt famili histri bɔt HLHS, i fayn fɔ tɔk to pɔsin we de advays yu bɔt yu jɛnɛtiks bifo yu gɛt bɛlɛ.

If mi pikin gɛt (HLHS), wetin a fɔ ɛkspɛkt?

Afta yu dɔn gɛt tritmɛnt fɔ HLHS, yu pikin go nid fɔ go to dɔktɔ we de mɛn yu at wan tɛm insay di ia fɔ di res ɔf in layf. Dis go mek shɔ se in at, in lɔng, ɛn ɔda pat dɛn de wok fayn. As yu pikin de big, i go nid fɔ go to spɛshal pɔsin we gɛt at sik we dɛn bɔn wit big pipul dɛn . Bɔrku pikin dɛm wae gɛt HLHS go nid fɔ tek at mɛrɛsin fɔ di res ɔf dɛn layf. Dɛn go nid bak fɔ tek antibayɔtik bifo dɛn du ɛni ɔpreshɔn, ivin fɔ ɔpreshɔn dɛn tit. dis kin ridyus di risk fכ endocarditis (infεkshכn na di insay pat na di at).

Wetin na di lukin-grɔn fɔ (HLHS) stetɔs?

If dɛn nɔ trit am, HLHS na wan sik we kin mek pɔsin day insay sɔm dez ɔ wik afta dɛn bɔn am. Wit tritmɛnt, di lukin-grɔn de dipen pan di kɔmplisiti fɔ di at difεkt na di pikin. Aks yu pikin in dɔktɔ bɔt di prɔblɛm dɛn we kin apin we dɛn du ɛni ɔpreshɔn. Sɔm pikin dɛn nɔ kin ebul fɔ du ɛksasaiz fɔ ɔl dɛn layf. Bɔku tɛm, dɔktɔ dɛn kin se yu fɔ stɔp fɔ du bɔku bɔku tin dɛn lɛk fɔ ple wit kɔmpitishɔn.

Wetin na di rεt we di pikin dεm we gεt (HLHS) de liv?

Dis na tin we rili sɔri smɔl, bɔt i impɔtant fɔ no. bitwin 20% εn 60% pan di pikin dεm we gεt (HLHS) de liv di fכs ia na layf. afta dat, di rεt we de liv fכ di nεks fayv, tεn, εn fayvtin ia na bכt 40%. di pikin dεm we dεn bכn wit nכmal wet we dεn bכn, we dεn nכ bכn bifo tεm, kin gεt bεtεh autkam pas di pikin dεm we dεn bכn wit lכw wet we dεn bכn. Wan stɔdi sho se mɔ bebi dɛn we bin sev di fɔs ia bin stil de alayv we dɛn ol 18 ia.

I at fɔ si dɛn statystik ya. Bɔt mɛmba se, mɛrɛsin sayɛns de go bifo ɛvride. Nyu tritmɛnt, nyu teknɔlɔji dɛn de kam. So i impɔtant fɔ mek wi kɔntinyu fɔ gɛt op.

Aw a go kia fɔ mi pikin?

Pikin dɛm we dɛn bɔn wit dis sik kin liv wɛl layf wit lɔng tɛm kia frɔm dɔktɔ we de mɛn dɛn at. Yu kin kia fɔ yu pikin bay we yu:

• Gi yu pikin di influenza (flu) vaysin ɛn di COVID-19 vaysin ɛvri ia.
• Tek yu pikin go to dɔktɔ we de mɛn yu at ɛvri siks mɔnt ɔ wan tɛm insay di ia .
• Gi yu pikin di mɛrɛsin we dɛn gi yu di rayt tɛm .
• Nɔ mek yu pikin nɔ du bɔku bɔku tin dɛn fɔ du , lɛk aw yu dɔktɔ se.
• If yu pikin gɛt prɔblɛm fɔ lan , ɛp am.

Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?

If yu pikin gɛt HLHS, yu kin aks di dɔktɔ kwɛstyɔn dɛn lɛk:

• Wetin na di prɔblɛm dɛn we kin apin we pɔsin du ɔpreshɔn?
• Ɛni prɔblɛm dɛn de we yu fɔ wach bɔt afta dɛn dɔn du yu ɔpreshɔn?
• Us mɛrɛsin dɛn mi pikin nid? Ɛni bad bad tin dɛn de we dɛn mɛrɛsin dɛn de kin du?
• Aw di sik (HLHS) go afɛkt mi pikin in layf?
• Us fɔlɔp kia mi pikin nid afta dɛn du am ɔpreshɔn?
• If a geht oda pikin, risk de se dat pikin go geht bak (HLHS)?

Fɔ gɛt pikin we gɛt HLHS kin rili mek yu fil bad ɛn yu kin fil yu wan . We yu de dil wit de strɛs ɛn nɔr shɔ bɔt yu pikin in at sik, e fayn fɔ fɛn sɔpɔt grup ɔr ɔda ples fɔ gɛt sɔpɔt pan aw i de fil. If yu gɛt strɔng maynd, dat go ɛp yu fɔ dil wit di prɔblɛm dɛn we de mit yu pikin in wɛlbɔdi.

Mɛsej we dɛn kin kɛr go na os

(HLHS) na siriɔs at sik we dɛn kin bɔn wit. Bɔt if dɛn no am kwik ɛn trit pikin dɛn fayn, dɛn kin gɛt chans fɔ liv gud layf. Dis kin nid fɔ mek dɛn du bɔku kɔmpleks ɔpreshɔn dɛn ɛn mek dɔktɔ de kia fɔ dɛn fɔ lɔng tɛm. Di tin we impɔtant pas ɔl na fɔ no se nɔto yu wangren de. Dɔktɔ, nɔs, ɛn ɔda wɛlbɔdi wokman dɛn de fɔ ɛp yu ɛn yu pikin. I rili impɔtant bak fɔ gɛt sɔpɔt frɔm ɔda mama ɛn papa dɛn we dɔn gɛt dis kayn ɛkspiriɛns. Nɔ lɔs yu maynd. Di sakrifays dɛn we yu de mek fɔ yu pikin rili valyu.