28º Depoimento: Onfalocele
Autor: GASTROSQUISE E ONFALOCELE! | Publicado: 2014-02-26T20:52:00-08:00


&nbsp; &nbsp;&nbsp; A Elisa nasceu com Onfalocele no Hospital de Caridade Dr. Astrogildo de Azevedo- Santa Maria/RS.







&nbsp;&nbsp;

Depoimento:





&nbsp; Nossa história não começa muito diferente das relatadas aqui
neste blog. Como todas as mães que desejam muito seus filhos, assim era eu
com 18 semanas de gestação,quando fui realizar o1º ultrassom morfológico do
nosso bebê. Ia tudo bem até que a moça nos falou que precisaríamos repetir
quando eu estivesse com 23 semanas, pois não tinha conseguido visualizar o
abdomem e o lábio superior do bebê. Pronto! Bastou para acabar com a minha
tranquilidade quanto à maternidade. Meu marido me dizia que não ia dar nada, que
estava tudo bem, mas no fundo meu coração de mãe sabia que algo não estava bem.
Poderia estar a caminho uma criança com lábio leporino e fenda palatina e algo
como uma hérnia na barriguinha. Minha intuição me dizia que com o rostinho
estava tudo bem, mas em relação a barriga eu não tinha certeza...

&nbsp;&nbsp;&nbsp; As noites não
foram as mesmas, mas eu procurava não ficar muito nervosa para não prejudicar o
nosso bebê, com as 23 semanas fui fazer um novo morfológico e veio a
constatação, o rostinho estava com o lábio superior integro mas apresentava um
Onfalocele no abdomem! ONFALOCELE!!!!!Meu Deus quase morri naquele momento, acho
até que uma parte de mim morreu mesmo naquele dia, todos os sonhos e
expectativas em relação ao meu bebê parece que caíram num abismo, eu nem sabia
o que era aquilo, o médico me explicou mas naquele momento eu só sentia o “luto
do filho perfeito”.&nbsp;&nbsp;&nbsp;

&nbsp;&nbsp;&nbsp; Quando cheguei em casa e fui pesquisar nem precisa
comentar, me desesperei ainda mais. Depois de passar esse período, e já mais
calma, me preparei para aceitar e receber bem meu pequeno tesouro. Foram muitos
ultrassons, ao total acho que 10, sempre controlando a Onfalocele (tamanho,
circulação e que tinha saído etc) e como estava se desenvolvendo o bebê. Só
fiquei sabendo o sexo com seis meses de gestação, a herniação ficava bem na
frente da genitália, mas como não se via nada entre as perninhas as suspeitas era
que fosse menina, e estávamos certos, o médico com 6 meses conseguiu ver, era a
nossa Elisa.&nbsp;

&nbsp;&nbsp; Durante a gestação tive pré-eclampsia o que redobraram os
cuidados, pois ela não podia vir antes, precisava de pelo menos 2 kg para
enfrentar a anestesia e a cirurgia. Foi muito repouso e muita polenta que comi
para a Elisa engordar. Após uma consulta com a médica que iria realizar a
correção da onfalocele, tive outro susto, essa má formação pode vir associada a
algumas trissomias. Foram outras semanas de
muito desespero, mas não tinha muito que ser feito, optamos por não fazer o
exame da punção do líquido (que verifica as síndromes), pois era de risco para
mim e para ela. Como disse minha médica: ela já está feita não vai mudar muita
coisa.

&nbsp;&nbsp; Pois bem, assim se passaram os meses, e o dia chegou, nem acreditava, já
estava bem preparada psicologicamente, sabia que ela ficaria na UTI (pensava em
uns 17 dias). Às 9:25h do dia 05/09/2012 nossa princesinha chegava a este mundo
para fazer brilhar nossas vidas.&nbsp; Só pude
ver ela rapidinho, com aquele monte de curativo na barriguinha, beijei a
cabecinha dela e entreguei nas mãos de Deus e da Drª Gabriela, tinha a
possibilidade de ser feito em duas cirurgias, pois tinha muito para fora. Às
15:00h do mesmo dia ela foi operada, graças a Deus coube tudo naquela
barriguinha de uma só vez. Só
pude ver ela novamente no outro dia, mas meu marido trazia fotos e notícias da
nossa pequena.



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Depois da cirurgia



Antes da cirurgia




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<![endif]-->



&nbsp;&nbsp; Quando a vi na UTI, entubada e
com os dreninhos, paralisei, mas não chorei, os choros vieram mais tarde,
quando a “ficha começou a cair”. A Elisa se recuperou super bem, se fosse só
pela cirurgia ela teria saído mesmo nos 17 dias que eu tinha me planejado. Mas
Deus quis mais de mim, do meu marido e da Elisa. Ao total foram 64 dias na UTI.
Ela tinha os olhinhos muito pequenos e mal abria eles,além de dificuldade para
deglutir, os médicos começaram a investigar isso, e descobriram que ela possuía
uma síndrome chamada de&nbsp; Dandy Walquer,
não sabemos ainda se está relacionada com a Onfalocele, o mais provável é que
não, só saberemos mesmo, após a consulta com a geneticista que será em março
deste ano.
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  false
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<![endif]-->

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&nbsp;&nbsp; Foram dias de muitas angústias, não só pela minha filha que
lá estava, mas pelos muitos outros bebês e seus pais. Acabamos nos tornando uma
grande família, na sala de espera trocávamos informações e nos apoiávamos. No
mesmo período em que a Elisa esteve internada, teve um caso de Gastrosquise,
ela deu alta um pouco depois da Elisa, pois deu uns probleminhas com os
intestinos. 

&nbsp; Hoje estou com minha pequena em casa, esta se alimentando
temporariamente por uma gastrostomia, faz fisioterapia e fonoaldiologia, para
auxiliar no desenvolvimento e aprender a deglutir. Nem acredito que vencemos
tudo aquilo, às vezes sinto medo pelo que vem pela frente, devido à síndrome,
mas&nbsp; tenho o apoio da&nbsp; minha família e amigos, e do meu&nbsp; grande parceiro, meu marido que sempre me deu
força e coragem para enfrentar tudo. Também não posso deixar de registrar o
apoio da equipe da UTI que sempre tinha palavras confortantes para nós,
enquanto estávamos lá e na hora da alta dela. Quero agradecer a este Blog e a
Camila Bento que me adicionou no grupo do facebook, estava nervosa prestes a ganhar a
Elisa quando consegui conversar com ela pelo face, me acalmou e ajudou muito
com as informações que me passou, até então eu não tinha falado com ninguém que
tivesse passado por essa situação.

&nbsp;&nbsp; Fico por aqui, e digo a todas as mães que estão agora
procurando informações sobre Gastrosquise e Onfalocele, que não é e nem será
fácil o que vcs vão passar, mas quando existe amor, somos capazes de tudo e
ainda mais quando é por um filho. No final tudo vale a pena, cada sorriso cada
conquista, só faz ficar mais distante tudo que vivemos. &nbsp;

Silvana Sousa, facebook: https://www.facebook.com/sil.sousaluto










Se você está precisando de ajuda entre em&nbsp;contato:&nbsp;

Facebook:&nbsp;http://www.facebook.com/#!/profile.php?id=100003545752802&nbsp;

Grupo de apoio Facebook:&nbsp;http://www.facebook.com/groups/398301213527774/

Msn:&nbsp;apoiogastrosquiseonfalocele@hotmail.com&nbsp;



I.G.O- Instituto Gastrosquise e Onfalocele:&nbsp;https://www.facebook.com/groups/451305481594408/?fref=ts

Mães e Pais de U.T.I:&nbsp;https://www.facebook.com/pages/M%C3%A3es-e-Pais-de-UTI/237629586320800?fref=ts



E-mail: gastrosquiseonfalocele@gmail.com
Pedimos
 as mães que precisam de ajuda que deixem os comentários com algum 
contato, pra conseguirmos ajudá-las. Beijos Camila Bento


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