Baby needs OnlineBaby-needs online
This could emotionally be awesome when for the first time a message of the baby's diagnostic was given to the parent, be it during a regular check-up during or after the baby's being born. Often they were shocked by the messages as they were facing a very unsafe trip as physicians and surgeries could not tell how it would turn out for their baby.
Diagnostic age: 29 background: Yes, more than they probably could, but then I can see why they tell you too much, too much knowing can sometimes be a terrible thing. So, if we had had a regular case of gastroschisis*, I probably would have said that was okay, but because we had a really complex one, it didn't get me ready enough, but I wouldn't have wanted to be ready if I didn't have that result, so it's really a little weird, but yeah, it was good to see the consultative surger before, it was good to see the neo-natal oneness.
He said, "The best case is that I'll fix her intestinal defect," because he said, I said, he said to me, "I could try it," and see a little of her, the end of her intestine was really thick because all the gall in her mouth had come back and come out of her mouth and the piece of this piece was the collapse up to her butt like a teeny one,
Gastroschisis An abscess that develops when the baby's abscess does not fully evolve in the uterus. Next to the Umbilical Cords, there is a small opening through which the baby's intestine passes into liquid inside the mother's body and outside the baby's abdomen after delivery.
The information came from many different sources: physicians, nursing staff, websites and self-help groups, scientific magazines and even television. Often a parent felt helpless both during gestation (if he or she was detected before birth) and after the baby was given up. What this means is that Information Retrieval was a way to feel that they were doing something for their baby and loved ones, and a way to counteract their sense of loneliness and impotence.
Overloading information made it difficult for parent to take all the information at once and took a while to grasp and comprehend what was going on with their baby. Overall, they felt that the information given to them by the clinic (often in the shape of a brief brochure or handout) was not comprehensive enough about what is right and what is going wrong and what is not, and that they could not give them all the information they wanted about the results.
Frequently, healthcare workers could not provide much information because circumstances were so uncommon and results were so different for each individual infant (see "Parents' experience of communicating with healthcare professionals", "Living with insecurity before and after NEOS"). And so the folks went out looking for more on their own.
Looking for both facts and numbers, as well as long-term effects, complications and surgical outcomes, and the experience of other parent or baby. Both Matt and Donna went home and examined the baby's own diagnose of Hirschsprung's disease*. Background: I don't really know, I don't, so I want the doctor's technical terminology so that I can look it up myself, yes, I don't know, I think it would have been good, but the doctor I talked to just before her operation and after that was very, very good on the telephone, she went through a whole bunch of things, I asked her a bunch of lots of questions and she explained things very clearly and in detail what I just need to, you know, clear my mind.
other than that, no physician or Surgeon personally would sit down and explain to us what was going on or what was going on, unless you went on the web and reading things and actually because I had been on the web and reading things I had thought up to ask them, so yes.
Diagnostic age: 30 background: Up to a point, yes, I mean, it was difficult because I was obviously quite emotionally about it, but the surger who actually did his surgery at the end was the one who came and said to us that he liked to draw a chart to tell us what Hirschsprung* was, obviously I had never even thought of it, and as I say, I always thought they would come back and say that he was well.
yeah the other nursing staff who had washed him out were there and it was another scrub sister who was there that you somehow got to know, but yeah, they immediately gave us this fact sheet to tell us what it was and they gave us like a health card so we could look for the warnings that he had an infection. really, it was like he was a doctor.
Yes, they weren't, you know, they gave us enough information, but not too much, because I think they obviously realized it was early day, but they had to emphasize the gravity of the thing and that if he showed any sign of anything, you should essentially return it.
Pretty much yes, I mean, the thing we find with Hirschsprung is that they're not, they can't give a really clear response, because there are a lots of strangers about it, so yes, we had lots of question and, you know, they responded as well as they could and to be honest, they, you know, he was pretty real with us, he said, you already know what we're going to do is test his parts of his intestine while we do it, and see how much is affected to see how much has to be taken away to see how much has to be done,
unsuccessful, he said, we will take it out, but he said different results, you know, it could, he could still have issues, he just said that we just don't know until, so yes, it wasn't, it's certainly not like yeah, we have this surgery and he's going to be okay afterwards, it was like yeah, he has what has to be done because the piece of his intestine doesn't work, so it has to be taken out and we can't really tell you, you know how he's going to be after that.
Hirschsprung's syndrome A infrequent intestinal disturbance in which the neurons do not evolve to the end of the intestine. Part of the intestine without neurons cannot be relaxed and can cause a blockade. However, it was really important to speak with the physicians, plastic surgeons and/or nursing staff participating in the baby's upbringing.
" Ally: Often talking and the help of specialized nursing staff was a great help. Surgists can create charts for a parent, and this can really help the parent learn more about their baby's health and their operation. Ages diagnosed: 41 Background: For the first times when you have a talk on the third you don't even know what to ask, so it's all a little like a bang, it's really because I'm especially into something like you think, just no, no experiencing and how, you know, I recall that I'm like colon, colon, colon, you're like, you know, I didn't, you know,
Diagnostic age: 39 background: Though I knew what she was saying, I got it because I knew the belly and the body and that again was an asset that I had that backdrop, it was that I kept thought, if I didn't have the backdrop, that it would be so much more difficult because I wouldn't realize that I wouldn't know near so much, so it was great to have that backdrop most of the while.
He doesn't have an anatomical backdrop, does he? The majority of mothers and fathers went online to learn more about their baby's health and operation, although they were often alerted by physicians, or only to go to places they could trust or respect (like Victoria, whose boy evolved necrotizing entocolitis (NEC)*). They described how they found useful information on specialised hospitals web pages or other condition-specific welfare web pages, as well as on parental boards that were full of information and experiences (see "Meeting other parental when a baby had neuborn atal and personal").
Wallpaper: Mike: There was very fundamental information there and then I really think the first thing we did was go home and take a look online. Yes, it is. Mike: Yes and stats, it's all stats and medicinal methods to deal with the circumstance, and it was all a little cool and a little off.
Yeah, so that was a few years ago, wasn't it? Mike: Yeah. In two thousand and six thousand. Yes, it is. Mike: Yeah. Diagnostic age: 31 background: Do you know, and talk to other parent sessions on the unit, nursing, who, you know, that was pretty good to get that kind of information.
There is information out there, but it's the right information, because when you get Google you get a forum where you get folks talking about their experience, but it's not necessarily, every baby is different, you know, there are so many baby girls getting refluxes, but every baby responds differently to different meds, so you can speak to the forum about what worked for you, but that might not necessarily work for someone else, but, you know, there are a bunch of things out there that really exist, it's just looking.
She was cautious that what she found online could be scary because she thought that those who are online are often the ones who might have poorer results. Feeling that when things go wrong, a parent only posts. Background: Because it was nothing I've ever seen and of course you go on the web and that's why I wanted to do that because it's pretty scary what you see because of course the guys who go on the web with the long detail story are often the guys who had the badest results because the guys with the good results just go on with taking care of their baby you know.
Diagnostic age: 22 background: Others said they did not want to look at the web and just wanted to go through their own experiences bit by bit. "Amy E. didn't look online because she was careful not to know what she would learn about her daughter's gastroschisis * diagnosed. Diagnostic age: 36 background:
So, when I went to what the intestinal research group did recently in Birmingham, I was conscious that I thought I was the only parental in the room who wasn't part of some kind of self-help group, and I thought it might be useful. However, they have talked about a whole days for all the kids with intestinal problems, I just don't know if it is for us, because I think I really hope that the [daughter] will live a very ordinary live, and I don't know, I just don't know if I should take her with me for a whole days with kids with really serious intestinal problems, I see that there is help, but I think maybe I don't know if it is for us.
Diagnostic age: 39 background: Yeah, probably just be cautious, I can recall a mother who was really concerned because her boy wasn't doing so well, his need for air had gone up again and she didn't really know why and she didn't really tell the crew that she didn't know and she didn't ask her to tell them again because she didn't know the first day and that scared her a little bit,
and I would really be encouraging folks to use that, the nurses ans the health care professionals as their information resource because there is a great deal of disturbing information that can make a disturbing stressing period even more challenging. Yes, yes, I definitely encourages guys to speak to the doctor; staff the doctor and nursing staff who take care of their baby, their kid for the information get as much information from them as possible and if you don't get it, ask them to tell it again, be very cautious where you look online, there are some very useful places but there are also some places that are less useful so just be very attentive where you look when you go outside the group.
The gastroschisis is a condition that develops when the baby's abdomen is not fully developed in the uterus. Next to the umbilical cords, there is a small opening through which the baby's intestine passes into liquid inside the mother's body and outside the baby's stomach after being born.
This is a condition that develops when the baby's abdomen is not fully developed in the uterus. Part of the baby's intestine and sometimes other parts such as the heart develops outside the abdomen and are capped by the cord. Hirschsprung's disease A rarely occurring intestinal disease in which the neurons do not evolve to the end of the intestine.
Part of the intestine without neurons cannot be relaxed and can cause a blockade. Necrotizing intestinal inflammation (NEC) NEC is a severe intestinal disease in very young infants. Infants can become seriously ill and an operation may be necessary to eliminate affected parts of the intestine.