I am trying to do some research on the youngest babies to survive in the N.I.C.U. around the world. In Adelaide Sth. Australia we recently had a baby boy born at 22 weeks and 6 days gestation.He had many of the usual problem associated with being so prem, but apparently is doing really well now.
Could you all help me find out the youngest surviving extreme preemies. Obviously patient confidentiality is very important, so basically all I need to know is for example:"a baby born at 22weeks and 4 days, the hospital and perhaps the year of birth."
I am really only trying to find out the babies born under 24 weeks. So if you could help by telling me the ones born between 21 weeks(I think only little amelia from america was born this young) and 24 at your hospital, I would be really appreciative of your help. Thank you and keep up the great we work of saving these little miracles.
Are you counting those preemies as the result of multiple births? I'm not sure if you've heard, but there were two sets of sextuplets born in June. One set was further along when they were born, but the other set in Minneapolis, MN delivered at 22 weeks. It didn't quite have a happy ending as 5 out of the 6 babies have died; however, one looks as if he may survive.
I don't know the exact gestation of the Minneapolis sextuplets, other than she was at 22 weeks gestation. There is another thread in this forum called "Sextuplets" and you might be able to read more about them from that thread.
Thanks, RainDreamer. I was going by what was reported in the MSP papers which may not have the exact date.
Also, there's a "sticky" at the top of the main page of this forum that says "Tiniest Baby Link." It has a list of the tiniest babies along with details of the births.
Also, there's a difference between "time in the womb" and gestational age of other babies.
Typically, the counting for the pregnancy starts on the first day of your last period, which adds 2 additional weeks to your pregnancy that you are technically not pregnant during. So when I had my son at 34 weeks, he had 32 weeks "in the womb". (more or less) so some of those accounts, to put them on even footing with other babies, 2 weeks should be added to the gestational age.
In that case our baby only had 20 wks and 6 days 'in the womb' because his WAS counted from first day of last period. Do any of you know much about a 'duplex kidney'? Our little miracle has a UTI and they found this on an ultra-sound scan.
I had a 24+2 weeker born in 2004 who was 1 lb. 11 oz. at birth. Dates are certain, within a day or two. He lived for 3 days and died from a grade IV IVH. Autopsy (performed because we donated his body, but not requested by us) showed he had no problems, genetic or otherwise, but was just born too soon.
We also have a second son who was born in 2005 at 28+2 and has done fairly well. However, he is often sick, has had pneumonia requiring hospitalization several times, has sensory integration disorder, and is considered to have a global developmental delay. He has physical, occupational, and speech therapy, and is making a lot of progress. He was not talking at all at age 28 months, but now at age 31.5 months has several words and is trying to communicate. He's had some issues with his eyes, although minor, and also has megalocephaly which has resulted in lots of testing. We've been lucky.
I know of a few others born at 23 weeks or so. One family I know has a son who was part of triplets born at 23+4. Only one survived, and he has had quite a few problems. He was born in 2004. I know of a few 25, 26, and 27 weekers who initially did very well, but later had significant developmental problems.
Knowing what I know now, I would have allowed my first son to pass peacefully rather than resuscitate him. At the time, we were not given a choice, he was born trying to cry and over their minimum weight and gestational age. It's a tough call to make, but he suffered horribly. I'm not sure what the cutoff should be. Sometimes it is irresponsible to resuscitate a baby. I know that might sound harsh, but I believe that just because we can do something, doesn't mean it's the best thing for all involved. I can understand parents wanting miracles. I wanted one, too. That said, I was not fully informed, and I think there are very few coming into the NICU that have a full understanding of what they will face, both in the NICU and after discharge.
We had a baby 22 3/7 wks., 430 gram, black girl. Fused eyes, sticky skin, etc. North Carolina. She did very well for such a small preemie. She had some ROP, head and gut were good. Had rickets from long term Hyperal. She would be 5 years old now. As far as I know, still doing remarkably well.
Unfortunately, I believe we see a trend of deliveries around here where the delivering MD will resuscitate anything. I think that once they are out of the delivering doc's hands, then the NICU fights the battles for the next 4-6+ months until discharge or death. I believe that if most of the delivering docs could see what happens to many of the babies, families, etc. with regard to futility of care, emotional roller-coasters, often times false hope ("if they survived to the NICU, then maybe they have a chance" idea that parents have post delivery room resuscitation), pain and suffering for the baby, often times SERIOUS ethical concerns, and for those extreme preemies that survive...the cerebral palsy, head bleeds, hydrocephalus, blindness, short gut, PPHN, etc. that often accompanies severe prematurity, then maybe the delivering doctors would reevaluate their resuscitation efforts. Also, the divorce rate and child abuse rate is much higher for families who have had a baby with a lengthy NICU stay.
I have a kid right now who was 24 weeks, 520 g at birth, doing very well. He had eye surg. and probable CP, but has done and will probably do fairly well after discharge. I guess you never know, and that is why some docs do deliver the extreme preemies.
Two weeks ago, I asked one of the residents who claimed they had "fixed" a baby if he would want to take him home with all of his issues if it was his child. He said, "No."
Travelingkind, I think the "if they survive to the NICU" mentality can be dangerous. Not exactly the same mentality, but we were told if our son survived to discharge, he'd likely have a more or less normal life. In this case I think it was partially because he was 28 weeks, when many are told the survival rates are very high and the complication rates very low. True, his NICU stay was relatively uncomplicated, but his life after discharge has not been uncomplicated. I think it is very important to make sure the child's family understands that even an "easy" NICU stay does not mean an easy childhood. They are being set up for heartache and confusion, not to mention more problems for the child, if they are led to believe there isn't a possibility of further hurdles to overcome. It is so difficult to know what effects prematurity will have in the long term.
My point exactly. But so many parents are given false hope and believe that if they survive delivery and make it to a NICU then it'll be ok. I've been up to peds to start IV's on our grads. I've seen our grads out and about. Even preemies who weren't extremely early can and often do have growth and developmental issues to face.
I had a primary a little over a year ago. 26 weeker. Twin. My primary had a Gr III bleed and ROP. I was straight up with the parents on what can happen with regard to the bleed for future development etc. She hasn't had MAJOR issues, but they are having to work through some stuff with her. Tone, weakness, eye stuff, etc. But they knew very early on that these are possible issues when you have a preemie. It still doesn't prepare you for it after you go home. That becomes a work in progress.
My orientation time with families includes information such as:
"ALL babies are different. You can have two kids with exactly the same diagnosis, gestational age, etc. and their stays will be remarkably different."
"Preemies tend to have eye, head, and gut problems. We will pray that your child doesn't, and do our best to keep it from happening, but they are all very common things with preemies."
"Get to know some of the families who have been here a while. They have had emotional roller coasters and would be a good source of advice."
"Make sure you have a good support system. Preemies often have developmental issues. You would benefit greatly from the support of friends and family members."
Etc.
I tend to be quite honest with folks. Some parents don't mind hearing it, and can hear it well. Some have much more difficulty believing anything is going to be wrong. A parent called the other night, 10 hours after discharge, and said her baby had screamed ever since she left. To be honest, I snickered a little off the phone to where she couldn't hear me. Her baby would have done much better if she had been there more. She is a young mom and the world revolved around her, so she often had more important things to do than spend time with him. She would have known how he screamed ALL THE TIME. He's a sweet little baby, handsome, and spoiled rotten. She roomed in for 2 nights, and experienced some difficulty then, but she still had nursing support available. After going home, she was all by herself. I pray that mother can grow into her role as a mom and learn to be a mom in good, healthy ways.
Thank you all for your thoughts it has really made me realise exactly how lucky we were/are. Sounds like the chance of survival for a 22wker like ours is quite low and then to not have the MAJOR problems that many have seems like it would be less than 1%! I treasure our little miracle everyday! To the mum that lost your baby at 24-2 I completely understand how you feel as we lost our first also at 24wks. He had started off with a brain bleed and a popped lung. He lived just 17hrs. But our little miracle this time round started off so well, it wasn't til 9 days of age he started to struggle with his lungs. He is doing so well now that he is 7 months old. No more eye problems, off oxygen and reacting with lots of smiles. Even his nurses who cared for him are amazed that he doesn't even look like a preemie and he is so strong. Someone mentioned above that its not till later after NICU that they can have problems. My question is would we notice them yet or are we in for future problems I need to look out for? Thanks again for your posts I really appreciate your insight and views and again it really makes me appreciate our little miracle even more. He is certainly in the minority, I just wish my wife and I had the support network that someone mentioned we needed in NICU.Almost ALL of my family didn't help us and only visited once or twice in 117days. Even now no-one seems to understand what we went through, most of our friends brush it off like its no big deal. And this really upsets me. THIS is mostly why i have appreciated your posts as you have really backed up my feeling that he IS
oops sorry pushed the wrong key and cut myself off!! As I was saying..... HE IS TRULY A MIRACLE!!
Again thank you to all the NICU doctors and nurses around the world. You are all incredibly special people, to see such suffering and still everyday, with all your energy continually save all of our babies and with such love too.
. Someone mentioned above that its not till later after NICU that they can have problems. My question is would we notice them yet or are we in for future problems I need to look out for?
Unfortunately you have no way of knowing if your child has problems until they are much older. You just have to wait and watch. It's not until they get older and start missing milestones that you'll know anything is wrong. Your pediatrician will be checking for that as he ages. He may not start walking at the same age as other children. He may have muscle weakness or problems with coordination. He may have problems with speech. He may have learning problems when he starts school. He may have vision issues. I think we sometimes give parents the false sense that getting out of the NICU is the end of that part of their lives, that now they have their perfect family and everything is fine. It may be... It may not.
My "miracle baby" is almost 3. She was delayed in some milestones (speaking, walking). She's still getting physical and speech therapy. She didn't have any bleeds either btw. I know her parents love her and wouldn't trade her for anything in the world anyways, but they would be the first to caution parents against thinking the NICU discharge is the end of the story. You can't focus too much on it because you'd drive yourself crazy, but I think it is a good idea to be aware that health issues can still arise and need to be dealt with.
BabyRN2Be
1,987 Posts
Are you counting those preemies as the result of multiple births? I'm not sure if you've heard, but there were two sets of sextuplets born in June. One set was further along when they were born, but the other set in Minneapolis, MN delivered at 22 weeks. It didn't quite have a happy ending as 5 out of the 6 babies have died; however, one looks as if he may survive.
I don't know the exact gestation of the Minneapolis sextuplets, other than she was at 22 weeks gestation. There is another thread in this forum called "Sextuplets" and you might be able to read more about them from that thread.