Specialist midwife - when baby has significant health/developmental issues

[Nanmumandmidwife]

I am an independent midwife. I work with those who are concerned about their baby’s health/development. I provide support & advocacy, helping them to make the decisions that are right for them and get the very best from the NHS

Do you mean when the baby is in utero?

How would someone find you? Two friends have been through a tfmr and would have loved someone to guide them through it.

@DreamingofSunshine yes, throughout pregnancy. I work with families from the time concern occurs, so often in early pregnancy .
I get referrals from colleagues (NHS or charities/advice centres) and people also find me on Google and Facebook One of the benefits of working independently is that I can give families as long and as many consultations as they need son that they can make a truly informed decision. I can then support them through TFMR/TOPFA or though a continuing pregnancy (and beyond). It is a huge privilege to be trusted at such a time.

@Nanmumandmidwife
Hi I did see your a midwife I'm wondering if you can give me advice I'm 27 weeks pregnant and from 20 weeks in my scans my babies long bones are measuring at 3rd centile 2 weeks behind my consultant has told me that it could be he's a small baby or could be Down syndrome or dwarfism they've offered me amnio test but I really don't want it and there gonna scan me every two weeks I'm wondering if you can give me advice have you heard about this? Its worrying me and I just can't enjoy my pregnancy at the minute with the constant worry. Thank you

@clairelouise96 I am so sorry to hear about the concerns for your baby. Where are you based? Have you seen a specialist fetal medicine consultant or specialist midwife?
Sorry, so many questions - is this your first baby? How tall are you and baby’s father? Have they commented on anything else unusual on the scan?
Many babies do appear to have shortish legs during pregnancy but are completely fine - it’s just how their proportions are or how they are growing. We do however consider other reasons, as you say including dwarfism (but usually extra indicators on scan) or a chromosomal issue such as Down’s syndrome or what we call asymmetric growth retardation.
Scanning you every two weeks may just increase your anxiety, unless they feel that they should keep a close eye on overall growth.
Has anyone talked to you about NIPT- a blood test that will give a pretty accurate indication of the chance of Downs, Edwards and Pataus syndromes? It isn’t definite like an amino is, and only looks for those three things, but perhaps worth considering as it has no risk of miscarriage.
I’m happy to review the scan report and discuss more by PM if you would like

@Nanmumandmidwife
Thank you so much for replying yea it's my first baby, I'm just about 5ft and my family mum and dad are about 5ft too and my partner is 5ft 11, I've been going back and forth to Fetal medicine with a consultant they didn't find anything else wrong in the scan they said everything else is measuring fine and the baby is weighing 1.15lbs it's just the long bones and measuring below, the didn't mention about NIPT blood test just the amnio test and I don't want the amnio test im so worried and I just can't relax, I don't know how to PM message you I'm new to Mumsnet and Im still unsure on how it works.
Thank you x

Look up the top right of the screen & click on my Mumsnet to see private messages. I’ll send you one. You can post directly on this thread but I was thinking about keeping your privacy

I can't seem to find it on my Mumsnet I'm so confused on how it works

Did you always want to be a midwife?
How long have you been in the job for?
Do you find yourself in unique situations every day or does the job ever become monotonous (I cant imagine it would)?

I'm currently 6+3 and sick as a pig. 2nd pregnancy. I'm already on 2 tablets of promethazine a day. In your experience, is this merely because it's the 2nd pregnancy (1st pregnancy I had to take promethazine once a day) or could it be a sign of twins? (They do run in my family)

@PlinkPlink hi!
Yes I always wanted to be a midwife but ended up taking a rather complicated route to it, via nursing, counselling and various things. Have been a midwife for almost 10 years now. Obviously there are some things which you do repeatedly, but as everyone you meet and work with is different it makes the job very interesting and challenging. The particular work I do involves getting very deeply involved with people at a time that they are worried. I feel very honoured that people trust me to help them at such scary times.
You poor thing having awful sickness in early pregnancy. I don’t think there is any reason why it being a second pregnancy would make it different.You are right that bad sickness can be more common with a twin pregnancy, but it happens in lots of single baby pregnancies too. Have you got your first appointment with a midwife (ideally 8-10 weeks) and first scan (about 12 weeks) organised?
I hope you feel better soon

Oh thank you for your reply! Yep midwife all booked for 19th Nov. Scan gets booked there and then.

It seems like such a wonderful job to get into. Can I ask which route you took to become one?

@PlinkPlink I was a nurse and so was able to do the shortened adhere programme

That should say “shortened degree programme”!

You're giving such useful advice, wish I knew someone like you irl! Can I ask you something about my 20 week scan? Most things looked ok and measurements on or around 40-50th centiles, but baby's abdominal circumference was almost off the chart, over 90th centile. Midwife didn't say anything about it and I only noticed when reading the report at home. Is this something to worry about?

Sorry if that sounds a really frivolous worry compared to some of the others... I've been really stressed and just trying to work out what I should and shouldn't worry about...

@nopun Thank you! I am glad to be able to share what I know. I’m in Sussex and work mainly across Sussex and Surrey as an independent midwife.
During the scan they have checked organs in the abdomen and obviously didn’t see anything of concern, so the fact that the abdominal circumference is proportionately larger than other things isn’t a concern. Do you have any other scans booked or are you on the “low risk” pathway with just a 12 and 20 week scan?

Hi! Can i just ask, is it possible to have difficult pregnancies with one gender but easier with another? Or just coincidence? My 2 boys were very easy pregnancies and spontaneous water births. My 2 daughters I constantly struggled with high blood pressure and sickness, and both were overdue by 9 and 11 days, needed
Induction?????

@Hotpinkangel19 I’m not sure that science knows the answer to that yet. Certainly we often see people who tell us how different it is but I guess the ones for whom it isn’t different don’t comment!

Thank you so much, that sounds reassuring. I'm high risk for many reasons (incl bicornate uterus and placenta previa, and previous c section) and am supposed to have additional scans at 28 & 32 weeks. It's such a long wait though, and do much can still go wrong...

Thank you for answering!!!'

OP - I had a private scan during pregnancy and the sonographer mentioned low fluid levels, but she said that if i was seeing her on the nhs they would have had to have been very low for her to be allowed to mention it but i still found that i had more positive experience WITH scans done privately than on the nhs.

Likewise i was lucky enough to have an independent midwife (funded by the nhs) for my second child and i found it a much more positive and reassuring experience.

So - are you able to give information out as an independent midwife that you wouldn't be allowed to on the NHS?

Also, how do you get your clients to get a better experience from the NHS?

@MummyOftwo12. Being independent and self employed I am not bound by an NHS employer’s policies, practices and politics! So often working in the NHS you hear “she’ll have to do x” or “y is not allowed” In my work I can share information about options and different ways to handle a situation, so that women can make properly informed decisions. You only have to read some of the posts on here to learn that many women are not given information, or at least not in a way that they can readily understand. I obviously have a professional obligation to provide good information, so need to be up to date with research evidence etc.
I can help people to get the best from NHS services in complex situations because I understand how the system works and therefore know what questions to ask, what is possible and so on. Because I have more time than I ever did in the NHS I can take time to reflect on situations and have the time to discuss things in detail with my clients.
Does that make some sense? It’s pretty complicated!

Hi, could I ask a question about neonatal blood test results?

My lo (now 6 years) was readmitted to special care at 5 days old for jaundice (428mmol), she had some blood tests done whilst there, that I requested latterly, which are flagged as abnormal.

When I wrote to the hospital to ask about them I was told that it was too long ago and so they wouldn’t comment, so I have no way of knowing how abnormal the results were.

Could you help me with them?

@PinkyU I’m afraid that is not really something I can get involved in. My thought would be that depending what your reason is for wanting the information (curiosity, a current medical issue, considering legal action) would determine how best to go about accessing the info which should be recorded in the child’s notes. You could contact the PALS service at the hospital, your GP or the child’s consultant could request the information, or you could instruct a lawyer who could then request the information. As I say, the start point has to be why you want the info & what you want to do with it.

Hi @Nanmumandnidwife,

Two questions for you.

1. My last two appointments with my midwife showed that the growth of my bump has fallen. The first ever recorded one, I was well over the graph chart line line, the second measurement wasn't initially recorded due to the baby's heart rate being tachycardic so was sent for a check up. When I had my 3rd measurement, between the first and 3rd measurements, it showed a dip but I was put at 35 weeks which was how many weeks I was at the time and the midwives weren't concerned but sent me for a scan due to the drop on the graph, sonographer was happy with baby's measurements and said baby was looking to be on the 50th percentile chart. At my most recent appointment my measurements showed I was still measuring 35 weeks so have had no change and I've got another scan tomorrow.

My question out of that is what are the chances they might say I need to be induced early? I'm really hoping that it's the way baby has been positioned hence the lack of growth in bump as I really don't want to be induced at 37 weeks.

My other question is are you glad you made that choice of switching from a nursing career to midwifery? I've been thinking about it for a while but obviously have had to put it on the back burner for now.