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TheWayOfTheLeaf t1_jayp4er wrote

Reply to comment by TheRomanRuler in ‘0% chance of survival’: World’s most premature twins record broken by blackchristopher

My twins were born 10 weeks early, weighing about 2.5 pounds each. Our neonatologists and other specialists all told us that they were very lucky to be as healthy as they were and not have any major disabilities. Lucky has meant heart murmurs, difficulty gaining weight and growing, reflux, chronic constipation, feeding issues requiring therapy, physical delays and disabilities requiring therapy, multiple surgeries, compromised immune systems, and more. They're six now and if you didn't know you'd think they are typical kindergartners. We currently have specialists for Physical Therapy, Urology, Gastroenterology, Endocrinology, and Psychiatry. And we are the lucky ones. Parents of these preemies need to prepare for a lifetime of complications, doctors visits, stress, fear, and trauma. These kids will have to fight for every milestone. At what point does it become unethical to keep babies alive and force them through a life of suffering? My kids are happy and have excellent quality of life and I still sometimes feel guilty for everything they have to deal with. It is a very complicated topic for sure.

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sj4iy t1_jazjjdc wrote

I think it’s something that should be less taboo to talk about. There’s a reluctance in the medical community to talk about palliative care or hospice for infants, but it’s important for parents to be knowledgeable about all treatment options as well as alternative options. Palliative care should not be treated as “the last resort”.

I’m really glad your children are doing well. My son was not premature, but he does have mild disabilities…and even then it can be overwhelming.

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TheWayOfTheLeaf t1_jb0n7gk wrote

Yes I agree. In my experience, from the outside looking in people only see the survival. I have PTSD from everything we went through but all I ever hear is oh look how good they're doing now! You guys made it! And yeah I'm grateful and I adore my children. But this has been an uphill battle for all of us, it's not over, and it's like we aren't supposed to acknowledge that at all. Just shut up and be happy they lived. I am, but it's still fucking hard.

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