Potential Down Syndrome Diagnosis - Result Negative

tod1982

Hi All,

Just looking for some advise here as to whether we should make a complaint against the hospital in our scenario or just let it go.

Our newborn (born beginning December) was examined when 1 day old by 2 doctors and a consultant pediatrician as they were informed by the midwife in the recovery room that they had concerns that she may have Down Syndrome.

The 2 doctors examined her separately and both found different traits mainly, low muscle tone. The first doctor in an arm and the second in her legs, ears were also small and mouth was small.

There are many traits that she did not have however.
The consultant came in and looked at her for 2 seconds and then they dropped the bombshell on us that there was a 50/50 chance she may have Down Syndrome and that they would need to do a blood test to check.

She also asked us to look at our newborn and see if we could see anything in her that would look like she had Down Syndrome to us. This diagnosis really took away from this special moment for us for a couple of days and we were constantly looking at movements, facial expressions etc to see if we could see it or not.

The blood test was taken when she was 1 day old and they told us that they would rush through the tests to try get the results to us in a week to week and a half, in the end it took 2 1/2 weeks to get the result back, which thankfully was negative and she is perfectly healthy.

When the public health nurse called on day 4 we told her about the diagnosis and she asked if my wife had been given Pethadine, which she had, which she believes may have led to the low muscle tone as the Pethadine had passed through the placenta and drugged the baby as my wife was too far into labour when it was administered.

Should the doctors/consultant have picked up in this fact, which I presume would have been in the notes before testing her for Down Syndrome or at least considered it and putting us through the past 2 1/2 weeks of waiting and worry?

Does anyone know if Pethadine could have any long term impact on her? She is perfectly healthy at the moment anyway.

We have a meeting with the consultant in the new year to discuss all this anyway but should we/is there grounds to make a formal complaint here?

Or should we just take it as a blessing that she doesnt have it and move on from this awful experience?

thansk

bee06

My (laypersons) opinion would be that they had a duty of care to investigate all possible causes of the low muscle tone including the Down syndrome possibility. I understand that it was incredibly worrying for ye waiting on the results but I would have thought not investigating it would be a lot worse.

Pethidine, based on what we were told in our antenatal classes and my own research when doing my birth plan, can cause the baby to be drowsy/sleepy when born which can have an impact on breathing and/or first feed. I haven’t seen anything about term side effects. Link to the NHS website on pain relief in labour below which includes a section on pethidine.

https://www.nhs.uk/conditions/pregnancy-and-baby/pages/pain-relief-labour.aspx

seamus

tod1982 wrote: »

Or should we just take it as a blessing that she doesnt have it and move on from this awful experience?

Yes, I believe you should.

Think about the opposite scenario; your child has low muscle tone, the doctors assume it's because of the Pethadine, and they say nothing. Then a few hours later your child develops Downs-related complications and dies.

A child is at the greatest danger of dying at birth, and the risk of death then decreases gradually over the first year to practically zero. Which means that doctors don't really have room to take a "wait and see" approach to a newborn's health. This means they're quite cautious, and often bluntly so.

Everyone wants to have a child that bounces out of the womb and you're given the thumbs up and everyone's happy. But medical reality takes priority over that. It sounds to me like the staff were honest in their appraisal; they gave you a 50:50 chance that everything was just fine rather than give you false worry or false hope.

I do understand your annoyance, but it's 2.5 weeks of worry compared to a lifetime of child-rearing. Give it six months and some perspective and hopefully you'll see that the doctors were simply being overly cautious with your child's best interests at heart.

jlm29

I would say just be thankful and move on to enjoy your time with the baby now. They were being thorough. It would be worse if they ignored it, brushing it off as something else.

xzanti

It must have been a horrible time for you both. I can't imagine the worry. But I agree with Seamus. Be thankful and move on and enjoy your little baby.

lazygal

First I would recommend getting your hospital notes. Reading them in a setting far removed from all the drama of the hospital can be very helpful. The hospital might be able to have someone go through those notes with you after you've read them at home to explain any issues. I had no bit issues but a number of small quibbles and reading my notes gave me clarity, some closure and helped inform me for any future pregnancies.

pwurple

tod1982 wrote: »

should we/is there grounds to make a formal complaint here?

There is not, and you should not.

What outcome would you like, that hospitals DON’T tell parents if they suspect something serious? That they DON’T test for fear of a complaint?

What the doctors did here was 100% correct. They did tests, they checked and doublechecked, informed you what was happening and why the tests were occuring all along the way. Good medical practice all the way there.

You got a fright, and had the best possible result. I would prefer that scenario to the alternative every time.

Thumpette

After with the others on here re enjoying your healthy baby and moving forward.

As someone who has experienced the full term stillbirth of my first son and subsequently the healthy but heavily monitored arrival of his little brother I find it both sad and frustrating that a scenario which ends in a healthy living baby can be anything other than celebrated.

Hospitals are dealing every day with tragic cases, giving news of babies who will not or have not made it, and of babies who have life altering conditions. I don't mean to sound harsh but beyond understanding if there is a medical implication for your baby or any future children, I cannot understand why you would even take up their time to complain about what sounds to be like excellent and cautious care.

I would imagine that hospital resources could be more fruitfully spent.

I saying all of this however, I am sorry if it's cast a shadow on your child's early weeks. I can imagine it was an upsetting time, I hope you get the support you need to see this from a perspective of gratitude.

lazygal

Thumpette, congratulations on your baby. I remember your story and I hope you're enjoying cuddles with your little bundle.

Thumpette

lazygal wrote: »

Thumpette, congratulations on your baby. I remember your story and I hope you're enjoying cuddles with your little bundle.

Thank you. He's 6 months old now and we are besotted xx

Wesser

What exactly would you be making a complaint about?
The doctors were thorough and organised appropriate tests for your baby?
An experienced midwife was not ignored or dismissed by a doctor?
A consultant paediatrician who has examined thousands if babies and is tberefore able to examine babies rapidly felt tests are needed and organised same?

I feel really sorry for doctors in modern times. They just can't win. If they miss down a syndrome...imagine the headlines.... "Senior doctor misses downs syndrome and dismisses midwifes concerns and two days later baby went blue...." in the Indo. Be thorough....and what do you get.... a complaint....

I actually think that if you made a complaint you could endanger the lives of other babies.

Welcome to parenthood. There is uncertainty. There will be times when you have to wait and see how things go or wait for the results. There is not always instant answers with children.

appledrop

To be honest I think you should be grateful that the hospital monitored your baby so careful after the birth. Now I know that thankfully it didn't turn out to be Down Syndrome but they can't take any chances. We read so many cases in news of births going wrong + babies suffering from complications that hospitials can't take any chances.

Enjoy Christmas + be thankful for healthy baby you have.

ted1

Just be grateful. They were following protocol, over the next few years there’s going to be many other issues. If you start complaining now you’ll find it tough yourself just stressing out over every little thing

McCrack

Predictably asking this here will get you the answer well sure isnt your baby healthy and you should be grateful.

OP if you/your partner have suffered psychologically you should discuss this with a solicitor specialising in medical negligence work rather than an anonymous internet forum.

Best wishes.

mirrorwall14

I’m not sure how to answer this. I completely get that it must have been a stressful period. However three different medical professionals (even counting the consultant as just a cursory check) were concerned that there might be an issue. It’s wonderful you were in the good side of the 50:50 call but honestly can you imagine if they hadn’t tested?

I don’t know what else you could expect them to do. Procedures appear to have been followed very well, with the midwife informing the doctors, two thorough examinations followed by doctors with findings reviewed by a consultant who organised the blood test.

Can you imagine if they didnt do the test on another couple because of a complaint in this case? And they missed something?

I would be seriously worried about the effect of a complaint in this case on future diagnosis.

I sympathise that it was probably some of the most worrying two weeks for you but early diagnosis is so important I wouldn’t want it any other way. I’m delighted for you that it wasn’t a positive diagnosis and I wish you the best in the coming months and years with your child

Nonoperational

McCrack wrote: »

Predictably asking this here will get you the answer well sure isnt your baby healthy and you should be grateful.

OP if you/your partner have suffered psychologically you should discuss this with a solicitor specialising in medical negligence work rather than an anonymous internet forum.

Best wishes.

Medical negligence? 3 doctors were of the opinion the baby may be syndromic. They voiced it and thankfully the baby isn’t. Shameful suggestion.

forgodssake

pwurple wrote:

You got a fright, and had the best possible result. I would prefer that scenario to the alternative every time.

Agree 100% with this .

McCrack

Nonoperational wrote: »

Medical negligence? 3 doctors were of the opinion the baby may be syndromic. They voiced it and thankfully the baby isn’t. Shameful suggestion.

No read again what I advised the OP

Explore the query with a solicitor specialising in medical negligence practice if there is a psychological aspect to this - that is not to say there is negligence by the doctors but the appropriate person to assess that is a solicitor.

Not unqualified persons on the internet

s7ryf3925pivug

That sounds horrible. You can find out early in the pregnancy if there's a risk of downs and some other genetic abnormalities with a harmony test, which just needs a blood sample from the mother. It can also let you know if it is a boy or a girl, though It's up to you whether you want to be told that.

We found the wait for the harmony test results stressful so it must be terrible waiting a long time for results for a newborn. I think everyone should get it done. Doctors might not mention it in case it results in people getting abortions.

pc7

If you feel the way the doc looked at baby for 2 seconds wasn’t sufficient or if they were cold etc you can give feedback via your service your say. You could also say 2 week wait was horrendous and perhaps they could look to speed this up for other families.
So glad all is ok I’m sure it was a very traumatic time for you all.

ScouseMouse

When my second child was born, they did the heel prick test. A few days later we got a call to bring her in for examination NOW. She had suspected galactasemia (spelling), Do not feed her till we see her. We nearly died when they said that and I jumped every red light from Tallaght to the Coombe. They redid the test and sent it by taxi to the lab.

We waited on tenderhooks at a family party for a call from the doctors, and it killed the party. However, when the call came and the doc apologised as it was a false alarm, we felt like we had won the lottery. I told her to not to apologise, we we delighted and soooooo thankful. They did their jobs and looked after the best interests of our child.

Perhaps you should look at it this way also ?

Neyite

McCrack wrote: »

Predictably asking this here will get you the answer well sure isnt your baby healthy and you should be grateful.

OP if you/your partner have suffered psychologically you should discuss this with a solicitor specialising in medical negligence work rather than an anonymous internet forum.

Best wishes.

If this is the case then each and every parent ever has 'psychological damage' multiple times over from all the times a doctor said "we will test for X, just in case"

I must be sitting on an absolute goldmine from all the GP visits over the last few years if a doctor correctly doing their job and informing the parents of each test and why they were doing it equates to medical negligence.

McCrack

Neyite wrote: »

If this is the case then each and every parent ever has 'psychological damage' multiple times over from all the times a doctor said "we will test for X, just in case"

I must be sitting on an absolute goldmine from all the GP visits over the last few years if a doctor correctly doing their job and informing the parents of each test and why they were doing it equates to medical negligence.

Perhaps what you describe are not actionable

Your experiences however are not the OPs

Rgds

Wesser

McCrack wrote: »

Predictably asking this here will get you the answer well sure isnt your baby healthy and you should be grateful.

OP if you/your partner have suffered psychologically you should discuss this with a solicitor specialising in medical negligence work rather than an anonymous internet forum.

Best wishes.

Ad accuse the doctors of being negligent.....in what way?
In what way were the doctors negligent????!!!!

Bicycle

McCrack wrote: »

Predictably asking this here will get you the answer well sure isnt your baby healthy and you should be grateful.

OP if you/your partner have suffered psychologically you should discuss this with a solicitor specialising in medical negligence work rather than an anonymous internet forum.

Best wishes.

As if medical insurance premiums weren't high enough.

Take more money out of an already tightly financed system and more babies and families will suffer.

It would be absolutely and utterly immoral to sue because hard working medical professionals were doing their job correctly.

If the OP does seek legal advice, I honestly hope no self-respecting legal professional will take it on.

McCrack

Wesser wrote: »

Ad accuse the doctors of being negligent.....in what way?
In what way were the doctors negligent????!!!!

I cant answer that because I haven't seen the OPs chart

I suggested the OP explore the query with a suitable professional to ascertain whether or not there is negligence

This point seems to be lost on a lot of people around here

LegacyUser

Hi,
I just wanted to say that nearly 12 years ago I experienced something very similar. I was in the delivery suite alone, as the hospital was trying to contact my husband the birth was very quick (early too so unexpected). When I gave birth the first thing the midwife said after she told me sex was “we’re just checking for downs” at this stage I wasn’t even given the chance to hold my child, I was on my own and still on delivery table. The treatment I received was awful, language they used disrespectful and insensitive. Too-ing and fro-ing, nurses saying no, doctors saying yes over the next day. Like your story, I had to wait approx 2 weeks for confirmation of diagnosis, all tests were negative. I wish I had made a formal complaint and not for any financial redress but only so that practices change (clearly it hasn’t). I couldn’t bring myself to have visitors, bring my child out (emotional state was not great), nor did I receive any support,guidance or advise from the hospital. It is important however that you let it go and enjoy every moment with your child, however I would ( I should have at the time) make a formal written letter of complaint.

cbyrd

There is a complaints office in every hospital. The nursing staff will even tell you it's important to use this as a service can never improve if they don't know how to improve it.
Put your complaint in writing, you can ask too, for a meeting with your consultant and some of the team as to what happened during the birth and what led to you being told that your baby possibly had downs.
Sometimes the understanding of a situation is enough to relieve our fears. You hd a big shock at a very vulnerable time. Ask your questions and get your answers, tell them how you felt about the way the possible diagnosis was told to you.
The medical profession in this country have come a ways in delivering news but starting off by saying " I'm sorry" (as happened to me a few months ago) when it's a syndrome that's very well understood is just wrong. It's still a shock, but it's still your little baby.
There's no need for legality, just answers.

seamus

McCrack wrote: »

I cant answer that because I haven't seen the OPs chart

I suggested the OP explore the query with a suitable professional to ascertain whether or not there is negligence

This point seems to be lost on a lot of people around here

It's worth noting that neither the OP nor their partner are the patient in this scenario - the child is.

So their ability to take any action is severely constrained as they are a 3rd party. The child clearly has not suffered any "psychological damage" as a result of what happened, and it would take an incredibly high bar for a 3rd party to a diagnosis to be able to sue for "psychological damage" because of a diagnosis given to someone else, which did not result in any harm to the patient.

I don't think your point is lost on anyone here, but it's a suggestion that could be made for anyone in any scenario, e.g.

"I went to the GP but I'm not sure if he gave me the right prescription because I still didn't feel right for a week".

Your response would be: "Perhaps explore the query with a suitable professional to ascertain whether or not there is negligence".

On the face of what the OP has posted, you're telling them to waste everyone's time exploring making a complaint when nobody has suffered any harm.

"I was really worried for two weeks", is not harm.

McCrack

Bicycle wrote: »

As if medical insurance premiums weren't high enough.

Take more money out of an already tightly financed system and more babies and families will suffer.

It would be absolutely and utterly immoral to sue because hard working medical professionals were doing their job correctly.

If the OP does seek legal advice, I honestly hope no self-respecting legal professional will take it on.

You are confusing private health insurance premiums with professional indemnity insurance which doctors in the private sector pay

Doctors working in the HSE public system do not pay professional indemnity insurance themselves

100's of millions of compensation is paid out each year by the State Claims Agency to victims of medical negligence so really there are many instances of "hard working medical professionals doing their job".... incorrectly

McCrack

seamus wrote: »

It's worth noting that neither the OP nor their partner are the patient in this scenario - the child is.

So their ability to take any action is severely constrained as they are a 3rd party. The child clearly has not suffered any "psychological damage" as a result of what happened, and it would take an incredibly high bar for a 3rd party to a diagnosis to be able to sue for "psychological damage" because of a diagnosis given to someone else, which did not result in any harm to the patient.

I don't think your point is lost on anyone here, but it's a suggestion that could be made for anyone in any scenario, e.g.

"I went to the GP but I'm not sure if he gave me the right prescription because I still didn't feel right for a week".

Your response would be: "Perhaps explore the query with a suitable professional to ascertain whether or not there is negligence".

On the face of what the OP has posted, you're telling them to waste everyone's time exploring making a complaint when nobody has suffered any harm.

"I was really worried for two weeks", is not harm.

Well you see parents because they have a sufficiently close connection to their child can have a cause of action for negligently inflicted psychological injury suffered by them as a consequence of some act or omission on the part of the HSE when treating their child (assuming a public hospital involved with the OP).

The ability therefore to take action is not "severely constrained" as you state - the ordinary principles of proximity apply and the parent/child relationship is as close as one can get in law.

Again the appropriate and independent person the OP should consult with for advice is a solicitor specialising in personal injury/medical negligence law who will take up the obstetric chart and the OP's own medical notes and having taken full instructions advise the OP on their entitlements (if any).