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minnesotaris t1_javy206 wrote

Highly probable that this is not the end of their woes. Source: I work in pediatrics.

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TheRomanRuler t1_jawupjt wrote

I can absolutely believe that. But what exactly might happen from now on? They might never become fully developed?

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minnesotaris t1_jax2o97 wrote

Piles of stuff that would take a lot to write about. There is a probability that there will be no effects whatsoever yet that is small. Very important natural processes happen during the last 10-16 weeks that medicine can simulate. To spend nearly the entirety of one's first six month alive, if not more, in the hospital has profound affects. Then, it can be doctor appts as far as the eye can see. The study of pediatric trauma related to continuous medical attention during the pediatric times is growing. It is disruptive to say the least. It is not how humans have lived at all until around the last 60 or so years.

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stuck_behind_a_truck t1_jaxfbqy wrote

My daughter (born 2000) had to go back to the NICU at 3 days old and was in the hospital 10 days. She was hospitalized again at 6 months thanks to RSV. We are only now linking her mental health issues to this trauma. I’m pretty sure she has Complex PTSD. But at the time the prevailing attitude was that babies will not form memories so they wouldn’t be affected. We lost a lot of time to help her. We are obviously doing what we can now with psychiatric help and trauma therapy.

I’m glad this field of study is growing. While it seems obvious now that trauma would stick around, you just genuinely don’t know as a new mother and trust what doctors tell you. I would have done many things differently as a young mom if I had a more trauma informed mindset at the time.

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minnesotaris t1_jaxk3lq wrote

Most certainly. It is VERY complex for the child. Paternalistic medicine had/has these unfounded theories that they still practice with, namely in women’s care, pediatrics, mental health. And it’s not limited to only male providers. Thx for sharing!

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Sugarshaney t1_jaxaof8 wrote

Ya. Tbh. If it were me, I couldn’t imagine putting my twins through that. I would have just listened to the doctors advice of no medical care. But with 3 of my own, I totally support their decision. Just feel bad for them.

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minnesotaris t1_jaxc1dz wrote

Pediatric medicine does good things. In severe cases of disease, it really beats the shit of kids who either don't understand or don't have the maturity to go through it.

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TheWayOfTheLeaf t1_jayp4er wrote

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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copyboy1 t1_jaxa5ag wrote

Yeah, my mom was an ECMO Unit neonatal nurse for decades. Kids born this early that survive often have lots of other developmental issues.

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minnesotaris t1_jaxci7p wrote

I have seen very small kids on ECMO and dialysis at the same time. Along with that, a ventilator and myriad intravenous medicines. Like, very small kids on 100% life support, if not even greater than 100% in abstract terms.

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