Possible future difficulties

[adoptingmum1]

Hi, I'm new here.
I'm currently in the adoption process and have been approached to be matched with a 7 month old baby.

I've been told that they were born at 27 weeks. They left hospital and NICU at 30 weeks.
Since then they've had low white blood cells and flat head problems but nothing else.
They're still slightly underweight but declared as medically fit and healthy by the paediatrician. No sight or hearing problems, mobility as it should be at their age, all bloods came back fine.

My issue though is the possible impact on the child's future. I'm doing some research on extremely prem babies and the conditions they have.
Of course though the majority of what I read and the first hand advice I'm getting is all negative. That it's more or less definite that they will grow up with some concerns whether that be CP, mobility issues, behaviour issues or sight loss.

My question is to everyone, has anyone had a baby as prem as this and turned out to be completely healthy? No long term conditions.

Also as another little question... does anyone know when these conditions may present? Is it at birth for example or before a certain age ?

Thanks in advance!

Are you in the U.K.? It's very rare to have a premature baby discharged at 30 weeks? I don't know any hospitals that allow a baby to go home that early? It's usually 37 weeks?

My twins were premature and I was fold just to expect them to do things later? So If they were 2 months premature then to add 2 months on to all the milestones? More significant long term issues wouldn't necessarily become apparent for a year or two or until the milestones had well and truly been passed and not met

I'm maybe thinking that they only need nicu for a couple of week then stepped down to scbu, and didn't leave the hospital at 30 weeks but more around 37 weeks.
Not all Prem baby's have cp. cp normally happens when they have had a bleed on the brain or deprived of oxygen, cp is also a very wide term and can mean anything from a stiff finger to wheel chair bound.
I think it will depend on how rough the baby's nicu journey was but from what you said sounds very good.
Many / most Prem child go on to live normal and happy life's and if probs do present gettin intervention early is key

I have a 28 weeker who had a very rough nicu ride with lots of issue, we we're aware early on that he would be delayed and have other health issues. But with the right medial help we are overcoming these obstacles

I'm afraid you would need more information about his nicu stay to help make desicisons on his forcasted future. As previous posters have said he will not have been discharged from hospital at 30 weeks, it's impossible. He would have been too small and unable to coordinate feeding at that gestation, it's likely he was stepped from nicu to scbu. You would need to know about his ROP screening status to know about potential sight loss issues and ask about cranial ultrasound scan results to see if he had any brain bleeds throughout his admission. Predicting premature babies outcomes isn't an exact science and some of the babies who have a smooth neonatal course go on to develop problems and some who fight by the skin of their teeth go on the leed normal lives. It really is a gamble I'm afraid

Thanks all.

I'm going to have to speak to my social worker - she's read the medical report out to me and it definitely says they were discharged from hospital at 30 weeks.
I thought myself that this was maybe wrong/impossible but they confirmed it twice to me.

Thanks for the info.

Definitely ask for more information. 30 weeks is still extremely vulnerable and dangerous for such a tiny baby to be discharged. The earliest I've heard of is 33 weeks and that's when they'd been born much earlier and were miraculous in how they progressed. Perhaps the baby was discharged from the hospital to another facility where they were taken care of medically.
I have a premature baby who is still not at due date yet. I can't tell you what will happen as mine still has a long way to go. However when they were in the NICU I spoke to a lot of doctors and nurses and let me tell you many were very casual about how well premature babies go on to do in life.
My baby's doctor does a lot of research into the matter and has kept follow ups on many of the premature babies he's had as patients sometimes up until they're 16. He told me an overwhelming amount of them catch up a few years into their lives and their prem start doesn't affect them. I've signed on to keep my baby as a follow up for him.

I would give you the advice I've been given. Don't look for what might happen, it puts things in your head to watch for and most of the time we attach a label before anythings actually happened. We're too quick to say "I read why this is happening" when usually it's normal for children to be different and develop different.

Find out as much as you can on their NICU stay and why they were discharged dangerously early. But I would try not to predict the future. While you might want to be prepared, it could just add in worry you might never need.

That can't be right. I'm sitting in a SCBU as I type and babies cannot be discharged until 35 weeks minimum.

A baby at 30 weeks would most likely still be having oxygen and monitoring, at a minimum. They would probably still be in an incubator.

Someone has got their facts /dates wrong.

Whatever the discharge date the reality is that none of us can say if there may be future difficulties, no dr can promise that. But the same for babies born at term - my "normal" baby turned out to have autism for instance. The fact the baby is so young would hopefully help mental well being.

My DD was born at 31 weeks and spent 6 weeks in the Unit.
No way was a baby discharged from hospital at 30 weeks.

It's more likely that the 30 weeks refers to the actual length of time the baby stayed in NICU, not their gestational age when they were discharged. Many babies born at 27 weeks would have to spend this length of time in hospital.

Yes, check with the social worker/hospital about 30 weeks. I can't see how that would be possible, no matter how well the baby was doing for their age.

My DH was born at 24 weeks 30 years ago. He has no long term issues, is very bright, and no physical impairments (and neither do his 3 siblings - he's a quadruplet). Outcomes for preemies are generally very good, but they obviously are at higher risk of complications than term babies because they are more delicate. This doesn't make the risk 'high', just 'higher'

Spent 30 weeks in the Unit.....that’s probably it. You’ve misread/ misunderstood.

I think they mean that the baby was in hospital for 30 weeks, not 3 weeks.

It's unlikely that a 27 weeker spent 30 weeks in hospital! I'm a nicu nurse. Most 27 weekers would be discharged home on or around their due date. Some earlier if there is a good home tube feeding team set up in that hospital. None of us can guess. You just need to ask the social worker more. They will have been given a badger discharge letter when they where sent home, it details all the things happened during their stay with each bodily system. Ask to see that

HI OP, I had twins at 27 weeks (well, 27+6 weeks).

I agree with the posts above - very early on, the medical team said my twins were fine (no medical issues) and were only on the unit for "feeding and growing". They were moved from NICU after a few days to High Dependancy for a couple of weeks, and then to SCBU (which was actually at a different hospital) - but weren't discharged completely until they were 36+4 weeks (so they spent about 8 weeks in hospital).

So, I think its definitely not true they were discharged at 30 weeks - unless like my experience, they were transferred from NICU at one hospital to another hospital (so discharged from Hospital 1 but admitted to Hospital 2)?? Its also highly unlikely that they spent 30 weeks in NICU - not unless there were serious problems (which doesn't seem to be the case).

But to answer your question - long term side effects of being that early will vary from baby to baby. My twins are teenagers now and medicine has progressed - 27 weeks sounds very early if you've never experienced prematurity, but even 15 years ago, 27 weeks wasn't seen as "very early" - that was for pre-26 weekers.

My twins have had no problems at all - one wears glasses but so do both parents. Both very sporty, social, bright (passed 11+ exams and predicted top grades for GCSEs). No health issues or hospital admissions etc, signed off as having caught up with their peers by the time they were 2.

P.S. I should also say that at 7 months, the baby is likely to be still under hospital care - I don't know the protocol but is it possible to meet with the paediatrician? Can you find out why the baby was born prematurely? Are there any concerns about the mother (substance abuse in pregnancy)?

If you want to message me, please do.

My first born was born at 33 weeks, spent only 4 days in NICU and I really, really pushed for us to be discharged from hospital. We went home at 34 and a half weeks, and that was because DC was doing amazingly well and I had a very sympathetic paediatrician who could see we’d be better off at home. DC was also a large baby, which helped a lot with it all as they were more robust. I was fully expecting to be kept in until 36 weeks, and was surprised that we were let out so early.

We were also discharged very early from follow-up paediatric care at the hospital at 6 months - most babies are followed up until at least one year old.

Being discharged from hospital at 30 weeks is very, very unlikely, especially as it would presumably be to foster care?

For what it’s worth, my four year old has no developmental delays at all, but was not as premature as this baby. I do know (as adults) a couple of people who were born premature (24 weeks and 31 weeks) who have no issues whatsoever, but it’s impossible to know really that that will be the case. But health issues are certainly not a definite result, especially nowadays.

I haven't had a premmie but i have worked with lots of them and I am an adopter.

Because of my job I get to see the early babies that do have issues. Ranging from mild delays to severe cerebral palsy. I have worked with a 22 + weeker who did amazingly well considering and is physically very able but has a lot of learning and behavioural issues.
On the positive side I used to get referrals for prem babies and by the time they got to the top of the waiting list they were nothing like the child described in the referral. They were doing really well with no obvious signs of delay.

Do you know anything else about their birth or pregnancy? If they were prem because of issues not picked up because birth mum didn't go to prenatal care, if b mum was a user or drinker or in a violent relationship, these things are likely to affect baby's development. Do you know much about b.parents?
Did baby have any visitors in nicu? Lack of early attachment is something to be aware of.

Good luck.

There are lots of different outcomes for premature babies.
You asked for positive stories so here are two:
My cousin is now 35 and was born at 28 weeks. She had no developmental delay once she caught up and has a degree and a PhD and is a university lecturer.
A friend of mine had her baby at 25+6 - she is now a petite (but so are her parents) 14 year old at a grammar school and thriving - also very sporty.
I know other families whose children have had lots of issues too - I think you can't necessarily tell at this age.
But, even if one was adopting a baby who had been born at term, one wouldn't be able to predict everything either.

As above -

There are a few key points at play here:

• Premature babies are massively variable in their outcome. It’s not as simple as ‘they had this number of problems in NICU so they will have X number of conditions’. They are developing outside of the womb and a variety of factors both medical and medical intervention can disrupt the developmental course or even prevent certain aspects in ways that we don’t understand. It is much more likely that they’ll have SOMETHING, but that something could be as simple as dental problems, some reasonable sight disruption, digestive problems - the usual things that full term people are at risk of.
• The kind of problems I think you’re thinking of... the really severe disabilities - research generally indicates 20-30% of babies at that gestation end up with those. That’s really quite a small portion, overall. It would mostly be clustered in that portion that had brain bleeds, sepsis, longer periods of desaturation etc.
• generalisation, and not true for all - adopted children often have had a rocky road in the womb, also. Is it court ordered or is it voluntary? NAS, FAS etc could be at play anyway.
• Finally, and I’m not suggested you don’t think so for a moment but it’s worth reiterating, a baby can have problems and be the greatest joy that you could ever find. And even poorly babies need homes x

Oh - and mine was 26+4. Walked a month later than average. Understands a bazzilion words, can say a few but is mostly a bit behind in speaking. Laughs, smiles, follows instructions, has ‘grown out’ of the obvious health problems. But population statistics are useless at the individual level. 99% of patients could be fine, but any baby could be the 1%

A 30 week baby would not be able to maintain its own temperature outside of an incubator I wouldn’t think most likely wouldn’t be able to breathe on it’s own and wouldn’t have a suck reflex for at least 3-4 more weeks so if that’s how bad there information keeping is I’d be very worried about what else they’re getting wrong. I’m not sure the actual statistics but I’ve known many baby’s born under 30 weeks that have minimal to no health problems. But you really do need to see medical records as who Evers giving you the information is obviously clueless. Good luck whatever happens

Another one not convinced of a 27 weeker was discharged home at 3 weeks of age. Something Def isn't adding up.

Also when they say everything thing is fine, is that based on actual or adjusted age?

In many cases though op you don't know until they're older. My friend addicted tow babies. One was massively behind in walking and talking, and is awaiting an autism diagnosis as well as manifesting issues with attachment. The next is advanced in everything and looks like she's smashing all the first few years of targets. She's actually overtaken the other child in some areas despite a 3 age age gap.
None of that was predictable at 4 m adjusted.

DD was born at 33 weeks and was discharged after 6 days in SCBU.

A friend had a baby at 28 weeks and she's fit and healthy. Her eyesight is terrible so she wears very strong glasses, but that's all.

Another adopter here.
To be honest I think you are looking at it backwards.

It isn't a point of 'are some prem children healthy?' It is 'what is the worst outcome given how they are currently presenting, and could i cope with that?'

My DD2 was born at 32+6. We adopted her at 2.5yrs
She had bad asthma& excema when baby-5, always got bad chests whenever she got a cold until ~age 10. Slow to speak, poor motor skills, some learning difficulties.
Of course we don't known what was prem, what was genetic, and what was caused by the reasons she went into care.

Hi, my DS1 who is almost 9 years old was born at 26 weeks. He had a lot of medical issues in hospital; burst gut, liver failure, blood infections, the lot...he came home at 4 months old. He had flat head until he was 2, was on home oxygen until 7 months old, medication until 7 months, was late sitting up and rolling over; these milestones didnt happen until he was almost 1. He also had a hernia on his groin which he had surgery for at 5 years old. Up until he was 6 years old he used to get quite scary Croup episodes so he would catch a cold and end up in hospital with breathing difficulties, but would get better quickly with steroid treatment. He needed some occupational therapy to help with fine motor skills aswell like using a knife and fork, using scissors etc.

He started a mainstream school and is still in mainstream school with learning support help; he is on the Autistic spectrum and has ADHD. No medical issues anymore though, although he has more bad days than good at school due to behaviour, his pediatrician referred him to the child and adolescent mental health service.

Sorry its so long...im only listing the struggles here but its mostly all lovely! Enjoy your new little bundle...i found my prem to be a really good sleeper and very easy mostly! never needed to sleep train him or anything like that.