LATER EDIT:
Pe talpa din stanga, in mijlocul ei, chiar sub degetele se vede o inimioara. Poate zburda libera de durere si suferinta in alta parte. Drumul ei aici pe langa parinti s-a incheiat.
„Dear Brandon,
Early last night Lotte suffered a brain hemorrhage, and it became clear that her mounting medical problems and the growing risk of additional complications made the chances of her recovering and leading a life of sound body and mind less and less likely. Out of love for her, Megan and I made the terrible decision to discontinue the artificial support of her life on ECMO. It was the hardest thing we have ever had to do, but we feel comforted knowing that she never suffered, and that we bore all of her pain. Had she lived and become aware of her medical condition we couldn’t have continued to do so, and weren’t willing to force her into a life of perpetual suffering and struggle. We’ll never forget the three magical days we had with our daughter, and though we are grieving profoundly, know that she will be with us forever in spirit. Someday we will tell her siblings about their wonderful older sister Lotte, whom we loved so much.
Since Lotte’s story has evoked such an outpouring of kindness, I wonder whether you would share the end of the story with your readers. As an image, perhaps you could share this photo of her footprints, which one of the social workers made the day before he surgery. She will walk with us forever.
Yours,
Adam”
Eu cunosc numai doua povesti cu omuleti care n-aveau nicio sansa la nastere si care astazi sunt eroii mei: Sonia Oanei si Mihai al Biancai. Dar sunt multi alti micuti care au venit pe lume cu probleme uriase, pe care un adult (poate) nu le-ar fi putut depasi. Dar ei au facut-o. Cate o minune le-a traversat existenta si au biruit. Fetita cu inima cat o capsuna situata in partea dreapta si careia nu i se dadeau deloc sanse este azi in clasa pregatitoare, iar baietelul de numai un kilogram ce avea talpi de doi centimentri este la gradinita. De-ar fi minuni pentru toti acei omuleti care ajung la terapie intensiva, pentru toti cei carora nu li se dau sanse de supravietuire … ca sa nu mai ramana doar linistea aia asurzitoare. O poveste Humans of New York:
„Brandon,
You photographed my wife Megan and me on New Years Eve in 2013, on fifth avenue. We were on our way from the opera to ring in 2014 at the 21 club. When you shared our photo on your site, your caption was that we met in Austria, on a train, in the snow.
On Monday Megan gave birth to our daughter Lotte (our first child), who had been diagnosed with a serious congenital heart defect (HLHS). On Thursday she underwent open heart surgery for nine hours. Although the procedure was technically a success, an unexpected complication prevented them from taking off the heart lung bypass in the OR. The surgeon made an unprecedented decision to keep her on ECMO (life support) for a few days to allow her heart to rest, so that they could try again to restart it.
She has basically been in stable condition, but over night developed some complications that necessitate trying to start weaning her off the machine today. I have no words to describe the torture we feel as parents, when all we can do is sit by our daughter’s beside, trying not to look at the tubes and wires coming out of her open chest, and holding her cold little hand. I had two magical days with Lotte, who before the surgery was basically a „normal” baby. We got to touch her, feed her, change her, and we’re so lucky to even see her open her eyes. I’m not a religious person so I’ve not prayed, but I constantly close my eyes and picture Lotte with her beautiful eyes open. I’m not sure I’ll ever see those eyes again, but I’m so thankful that I have them in my mind.
I wanted to ask whether you could somehow help us increase awareness of pediatric congenital heart disease, which is sadly not widely known and publicized. It’s especially hard for Megan that today is Mother’s Day, and perhaps you could share a photo of Lotte on your site. Doing so would not only inform your readers of this important and terrible condition, but help us hear the support of others.
Thank you so much.
Adam”
poveste si fotografii: Humans of New York
