Managing concern around health uncertainty of 9 month old baby

[CanadianCutie]

Hi all,

It's my first time posting here, so apologies in advance if my terminology is up to speed! I am an approved adopter who has been linked for the first time after a very long wait, so me and my husband are super excited and pleased about that. However, I am a little anxious about some of the details in the baby's PAR - there are some questions surrounding her health, and it's noted that she is developing along the lower end of the range for her age.

I'm torn between a genuine sense of excitement at the prospect of possibly adopting a little one, and even better, a child that hasn't been subjected to neglect or abuse, and a real sense of nervousness at the uncertainty surrounding her health and future development. Is this normal?

Are there any words of wisdom on how to deal with this? Or any resources I can check out?

Thanks so much for taking the time to read!

Congrats on your link. From experience I would say you need to find out what the worst case health scenario is going to be. If you feel able to parent such a child then I would go for it. If you think you wouldn't be able to manage the worst case then I probably wouldn't go ahead with the match. We were told our little one was developing brilliantly and although she had a pre existing condition this wasn't affecting her so all should be hunky dory. It wasn't, at least it wasn't what we expected. It has been a long road because we just weren't prepared for the reality. We do adore parenting her and were very open to the idea of a special needs child but if you progress I would recommend you have a robust support plan from the outset. You don't want to be fighting for that when you are trying to bond with your baby. Good luck! Feel free to PM me if you have any questions

Are you adopting in the UK? If it were me, I would try and read between the lines, because I find it hard to believe the child "hasn't been subjected to neglect or abuse". If by that you mean that the baby was removed at birth, you will need to bear in mind the effect of pre-natal and birth experiences. There will also almost certainly have been trauma associated with the removal into foster care, and with such a young child, you will not yet be able to know how much of that can be healed. It may be helpful to ask the child's SW about any known issues experienced by any older siblings, in terms of family health/development. If the birth parents have consented to sharing health information, that would be useful to know as well.

Delayed development is common among children who need adoption. It's impossible to say how much of this will be something that "just" needs nurture and time and therapeutic parenting, and how much might be ongoing. Anecdotally, people will be able to tell you truthfully that their adopted LO's either caught up dramatically, or remained slightly delayed, or developed further issues. There is so much that is unknown about a very young child's potential development, and the medical advisor's report in the PAR will probably detail all the possible issues because it is only fair to do so. That is not to say all of them will materialise.

That all sounds very negative, and I don't mean to be, because you could be the perfect family for this child, but I sense from your post that you are trying to have your eyes open about possible issues. "What every parent needs to know" by Margot Sunderland is a good place to start, explaining the neurological development of babies and young children, and the impact of positive or neglectful experiences right from the beginning.

Good luck with your journey, and I hope all goes really well for you

Thank you so much for your response.

At the moment, there a slight concerns surrounding her motor control and low muscle tone. They are running tests which we will told about when we meet her SW, so that should clear things up a little. So nothing mega alarming, but her parents' history made for pretty grim reading - both in care, the dad at special needs high school (though my SW said that a lot of this could be down to nurture - if they were badly parented and neglected, then this will be reflected in their history).

So balancing hope that she isn't too negatively impacted by genetics, with the awareness that there could be some serious problems down the road. My cousin, who was adopted at 14, comes from similarly disadvantaged background with parents on the lower end of the educational scale, is a computer genius software programmer, but struggles with emotional problems dating back to childhood, so I know there are no guarantees anywhere.

Just can't stop these thoughts roiling around in my head, along with the excitement that we might soon be parents to a little one...

I'm sure you will explore things and make the right decision for you. I do echo Stampingduck that you need to work out whether you can cope with a "worst case scenario" if that happened. I remember on my training a SW made a throwaway comment about "of course you may not go back to work" and I got very touchy (in my head!) thinking "of course I bloody will otherwise how will we eat?"...Ummm, and here we are 18 months on, and it turns out that LO needs much, much more from methan I could have imagined, and although I am working, it looks NOTHING like work did before and it still nearly breaks me. Looking back, the indications were there in the PAR but it was too much to take in, and I glossed over some things that I should have considered more carefully. To be clear, I love LO more than the world, and wouldn't change a thing. But you may well need a decent support package, which will be hard to argue for if you are exhausted already, so it's good advice from Stampingduck to have those conversations now.

(I'm sure you know this, but do be careful about posting identifiable information about yourself or anyone else on here - it's very public, and very easy to google...)

We were very much the same as mydutifullaunderette in that returning to work, even part time, made life incredibly difficult and meant we had to fight for help at the eleventh hour.
A lot of babies will have low tone and delayed development and catch up, but I would be wondering what they are suspecting if they are running tests already.
All the possibilities for our child weren't disclosed to us, we had to research them ourselves so again I would be very insistent on obtaining a full and accurate medical history. As for the special needs father although I agree it could well come down to nurture and his own opportunities I wouldn't overlook the fact that a lot of learning difficulties can be inherited.

This uncertainty is the downside of adopting a young baby (as I did, too). Although uncertainty can persist throughout childhood, a paediatrician friend told me that by the age of 3 you pretty much know what's going on.

Have you been offered a meeting with the medical advisor? Could you ask for one? Though even then, there may not be anything they can tell you that would put your mind at rest. It's just what the journey is, I'm afraid - there are very very few adopted children with a background that doesn't include one or more of neglect, abuse, mental health issues, learning disabilities, drugs or alcohol.

Your anxiety at this stage is very normal - I was going up the wall with it; I was terrified. I think you have to think through whether it is likely that you will be offered any child with enough guarantees to put your mind at rest. If not, then it comes down to are you prepared to make the leap or not? There are no easy answers and no assurances, I'm afraid. But we are here to hold your hand.

Really excellent advice from Stampingduck, and mydutifullaunderette, and Devora.

My son was three when he came and we did know pretty much what to expect, although he does still throw the odd curve ball!

I echo Devora in that ...there are very very few adopted children with a background that doesn't include one or more of neglect, abuse, mental health issues, learning disabilities, drugs or alcohol. And from the PARs we have read I would say many of the children had a variety of these things, I had kind of gone through the process thinking, what's 'worse' mental health issues or drugs, or alcohol etc, then found actually birth mum may have one set of 'issues', birth dad some similar but different 'issues' and it was not as straight forward as I had thought!

Aside from the good advice above, I'd never have thought of all that so I must say you are getting the best from Mumsnet, so many people with different experiences.

I would just add make sure you and your dh are on the same page. Talk openly together and see how you feel. If one of you feels very differently then you need to go with the person who says no! I know it sounds obvious but sometimes it's tempting to try and talk the other round!

We saw details of a baby with a huge catalogue of 'issues'. I admit I first thought there was no way I could cope with that potential risk but I saw his gorgeous photo and was smitten! My dh was just not sure, he felt we were not a good match for this child and so with regret we did not pursue him.

I know now that we have our own gorgeous, boy that this was right and it would not have been fair to try and push my dh into accepting more risk than he felt happy to take on.

The flip side of this is that in adoption risk really is a factor, even for seemingly problem free children.

Good luck.

You've had some great advice already, but I just wanted to acknowledge how tough it is. Most parents want the best for their children, but as adopters you find yourself in the difficult place of trying to be 'realistic' about possible difficulties, whilst simultaneously feeling hopeful that they won't arise. That hope can feel quite taboo.

I'm not trying to minimise the decision you're making, but I would be amazed by someone who wasn't nervous and questioning at this stage. I had second and third thoughts post linking, this is life changing.

Saying that, adopting our DD is the best decision we've ever made BUT there are other families who would not have been a good match for her and they also made the right decision.

All the best.

I am really grateful for the excellent clear-eyed advice you have all offered me here - I am touched by your kindness and sincerity - will keep you posted on what happens.

Thanks again

I agree with everything PPs have already said.

I'd suggest you do think through what would happen if LO did turn out to have SNs, learning disabilities or anything else. Is not working (or one of you not working) an option? How good is your support network really? How confident are you that you'd be able to fight for support/diagnoses etc should you need it? And so on.

Yes, the anxiety is completely normal. Reading PARs is the weirdest of situations - when you are a parent and your child has SN, you get on with it, as I have found with DS. But trying to decide, in the abstract, whether you are equipped to parent a child who may or may not have an unspecified level of difficulty, when you've never parented any child before, is a whole new sort of curve ball. Be kind to yourself and accept that, at 9 months, there is very little certainty. My two came as toddlers - one had an entirely unremarkable medical report and 9 years on has quite significant issues. The other one had a far more thorough and depressing prognosis, and is fit, flourishing, achieving well at school and driving me round the twist. All you can do is find out as much as you possibly can about the level of uncertainty and the worst case scenario, and then decide whether that's a level of uncertainty/worst case scenario you can live with. The rest is the great adventure of parenthood

What I would say is insist on talking to the medical professionals. With the best will in the world, social workers do not get to read the child's medical record, and they are writing reports based on second or third hand interpretation of medic speak - sometimes, for example, what makes it into the PAR is what the foster carer has been told by the Dr and reported back to the social worker. Your first port of call would be the community paediatrician who is the medical adviser to the local authority. Talk to them - not just a report. You may also be able to talk to the paediatrician who is caring for the little one, although there will be issues of medical confidentiality and you may have to go further down the road of expressing interest/being linked. But ASK. Don't feel that somehow you are 'only wanting a perfect child' if you want to know everything about their medical situation and history. You won't get it once the adoption papers are signed so ask the questions now! I was too scared to ask with child 1 which actually led to a significant misunderstanding and could have resulted in unnecessary surgery for them as a toddler. By child 2 I had learnt my lesson!

With specific reference to the special needs high school, the best estimate (which isn't very exact) is that IQ is around 50% heritable. So I think if the reason for birth dad attending special school is a mild-moderate learning disability, there might be some inherited risk to the little one. Equally there might not. One of mine has a birth parent with mild LDs and certainly hasn't inherited them. Mild learning disability is also far from the end of the world though. Again, all about thinking through what sorts of uncertainty you, personally, are able to cope with.

Good luck and I hope you end up making the right call for you.

So nothing mega alarming, but her parents' history made for pretty grim reading - both in care, the dad at special needs high school (though my SW said that a lot of this could be down to nurture - if they were badly parented and neglected, then this will be reflected in their history)

Social workers are not experts in child development or learning difficulties.

They are not medically qualified .

They are prone to saying things like " well yes, child has X Problem but we are confident that this will improve / go away once the child is placed for adoption " when there is NO EVIDENCE for such a statement .

I think it's very likely that a person who was at a SN high school in the 21st century was there because they had moderate learning difficulties and not just because they were " badly parented and neglected " . Local authorities do not spend extra money on these placements lightly .

You hint that the child you are considering has been in care since birth or soon after. If so, what do you think is the cause of her developmental delays? ( I don't mean you post the answers here, I mean you need to think it through yourselves ) .

I know two babies of a smiliar age who have been in care since birth . They have excellent foster carers, who are very experienced parents and one FC is a HCP. Both children have significant developmental delays. The families who adopt these children need to accept that these children will continue to have SN. If they are significantly delayed when they are months old, it's likely that they will be years behind their peers when they are years old .

I think you and you DP have to be clear about what level of SN you can accept . Eg can you parent a child who has SN but is supported in mainstream school ? One who has to attend a special school ? What are the services like in your area for children with SN? What support will you have from friends and family ? Can you afford for one of you to be a SAHP for , say, 10 years ?

How much do you know about the issues that this baby has ? Do you know about the risks of drug and alcohol exposure pre natally, if relevant ?

Have you seen a medical report on this baby ? If so, you need to discuss it with your community paediatrician or GP . You can also consult the medical advisor to the panel , although he or she is a interested party .

Good luck with your decision

Thank you all for your input. I have a meeting in the next few weeks to speak to the SW, so will have a chance to ask all these question, particularly those surrounding the baby's long term health. I made it clear to my SW (and it's noted in our PAR), that while we can handle learning difficulties, we want our child to be able to attend mainstream school and live an independent life one day. I am swinging like a pendulum between excitement & optimism (couldn't sleep a wink last night, imagining what she might be like), and wondering whether I might be on the verge of making a terrible mistake. Sunshine is winning the day, but I won't really be able to make any sort of decision until I go through all the details with the SWs at the meeting.

On top of the health questions you've suggested, are there any other questions I should be asking, or areas I should be focusing on? I don't miss to miss any opportunities to find out as much as I can!

It took more than 6 weeks for us to be able to make contact with the medical adviser. I'd get on the phone now to your sw and ask them to organise a meting or telephone call.

Hi I adopted my eldests (by sgo) biological half sister at birth. She was placed with me literally the day she was born. And I was in a similar position to you when making my decision.
When I considered my decision recent medical history was key, she was in my case exposed to drugs in utero. It took absolutely ages for medical opinions to swing into action. Do not take your sw word for anything to do with medical issues or development please, I mean no disrespect to sw but they are not qualified and in my experience are naturally keen for a match and so downplay potential issues.
That a bp has never attended main stream schools for example certainly speaks to me of much more than neglect or issues with parenting being solely responsible.
It's also important to remember nothing is certain (always the hardest part!) my dd went through withdrawal at birth and has developmental issues associated with this as well as a seizure disorder. Neither of which presented significantly until she was 18 months.
Happy to answer any questions if I can be of help.
basically I would start asking for medical information immediately, don't wait for the sw meeting it will take a while to get it and just ask as many questions as possible, lists are your friend :)

Yes, I agree with Samantha and kitchen. We were told in the CPR there were no significant health concerns, then found in the medical report that there potentially very significant health concerns, which the SW writing the PAR had misunderstood/minimised/overlooked. But we didn't get the report for months after the link was agreed.

I'd keep pushing for med report/meeting with advisor.

I think we would allowed to meet with Med Examiner - compiling questions to ask now! Please feel free to send through any sensible ones.

And thank you for all your input - it's very much appreciated :-)

I think you have a bit of a conflict between two basic issues , which is that you want to adopt a small baby but you can only accept mild learning difficulties .

So you need a baby who have been removed at birth or soon after , otherwise they won't be young enough.

Usually this is because of a combination of the following factors in the birth family's circumstances - addictions, mental health problems, learning difficulties and DV.

It's unlikely, though not unknown , for it to be just DV. This is because most women whose ONLY problem is Dv are able to use the supports available to them to leave their violent partner and they have enough insight to see the consequences of the alternative ( gross over simplification of complex issues I know ) .

Of course there are other, fairly rare , circumstances, such as women who relinquish their baby at birth because their family or partner won't accept it.

All the other three background circumstances have potentially serious implications for the baby and make them high risk for the difficulties you can't accept . They often occur on both sides of the family and in the extended family ( otherwise the child would usually be placed with them , as in mama1980s family ) .

So you are left with waiting for one of the very few babies who have none of the risk factors . These babies will be in very high demand and you will face tough competition for them .

If you take a baby from a riskier background , you are in the situation you currently face , which is that the baby is too young to get a realistic idea of the longer term prognosis .

So you may have to relax one of your Criteria . Either accept a higher degree of risk or consider an older age group, where the prognosis is more reliable .

Please understand , I am just trying to be practical and realistic . I am not judging you for any decisions you have made . Nor am I judging birth families who have found themselves in very difficult circumstances . And I'm very mindful of the fact that all children, whatever their background, deserve a family who can be good enough parents for them and love them as they are .

HTH

Just want to thank you all for your advice - we met with the LO and made the decision not to pursue the link as it was clear that her needs were greater than originally thought. So it's upwards and onwards. I hope they find the right parents for her...

Thanks for coming back to update us. I'm sure it was difficult decsion and I hope you find the right child for your family

Thinking of you and hope you will find the right child soon.