Need info/help to start antenatal care - Please don't read and run xx

[Cassie2015]

Hi ladies,

I have not gone to see my GP yet and I don't think I will until I am 8 weeks (currently just 4).

I have lots of questions about antenatal care so hoping that some of you will be able to help!

I got pregnant in October 2014 and my lovely baby was diagnosed with a severe heart condition at the 20 week scan. From then on, I had appointments at the hospital every month with a cardiologist for the baby but the rest of my normal midwife checks were done at my local midwifery unit next door to my GP. Baby was breech and it ended being an emergency c-section due to heart rate dropping at hospital. Baby's condition is not proved to be genetic and doctors just said that I was a a slightly higher risk of having another child with a heart defects (5% instead of 1%). My lovely boy had 2 open heart surgeries, 4 cardiac catheters, we only had a month at home in between surgeries and when it was obvious they could not help his heart, he was not a candidate for heart transplant so my husband and I had to turn off support when he was about to turn 6 months old. Understandably, I am extra worried for this pregnancy and really want to make good decisions for my care.

Here are my list of questions :

1. Would I be considered high risk with my new pregnancy?
2. Would my care be consultant led? I am expecting extra checks on the heart after 20 weeks scan but not sure if I will see a consultant before they are able to see the heart in detail.
3. Am I able to chose to have all my antenatal care at the hospital and have nothing to do with the midwifery unit near my GP (I felt that as soon as my boy was diagnosed and it was obvious I was not going to give birth there, they had lost interest when frankly I really needed my midwife to show extra care and compassion).
4. Am I likely to see the same midwife at the hospital if all my care is there? I am more than happy to work around that person's annual leave etc I just really feel I want them to get to know me and baby's patterns to be able to note any changes.
5. My c section with my first son was in June 2015 and this baby is due on 16th October 2016 so 16 months difference. Do you know if I am able to do VBAC or would it need to be a c section again?

Thank you xxxxxxx

To be honest, these are all things you need to discuss with your midwife. This pregnancy may be very different to your first but that may not become obvious until you're further along.

Can you self-refer to the midwife?

Good luck.

Sorry for your loss.
I don't think anyone on here can answer such detailed and specific questions for you. Most people on here have self-referred to a midwife, there is a thread running at the moment about it. Or speak to your GP.

Hi there.

for your loss

I don't know all the answers and am not an expert but will do my best.

1. Unless your son's heart condition was genetic then this alone wouldn't make your current pg high risk but the previous c-section might.
2. You probably would be consultant-lead (or some trusts do have shared-lead) but what do you want?
3. Ought to be possible but it will depend on the trust. Sounds like a good idea to me.
4. Is unlikely - with the best will in the world their priority is not going to be giving you the same midwife throughout. If this is really important to you could you afford a private midwife? I had each antenatal appointment with a different team member but was really glad of this in the end as I was in the labour ward/delivery suite for over 36 hours and they changed shifts every 12 hours so I was familiar with each one as they came and went - except for one who I hadn't met before and it was she who spotted the thing that may have saved my baby's life (being at least a couple of decades more experienced than the ones I had met) - so for me there are big advantages to not having the same midwife throughout too.
5. I would think they would encourage you to go for vbac unless there are any other complications

Hopefully in the time I have written this there will be some more knowledgeable answers too.

I would definately think you will have consultant lead care after the problems your first child had with their heart. You should see the same doctor throughout. The midwifes at hospitals in my experience are different everytime and only weigh me Do blood pressure and test urine so I can't see you having the same midwife throughout at the hospital but at your doctors surgery it should remain the same unless they are off ill or on holiday. Your consultant will decide on whether to vbac or c section, depending how you feel about it and your scars from previous plus position of baby later in pregnancy. So sorry to hear what you had to go through with your first child and I understand your worrys. I am only saying from bits I know myself the doctor at the hospital/midwifes will be the ones who can go into more detail about it with you. And answer your questions more throughly, best of luck with your pregnancy

Thank you so so much everyone, this reassured me a little.

I can self refer to the local midwifery unit which is what I did last time but I don't think I can at the hospital? Were you able to self-refer for hospital care?

Hi Cassie,
So sorry for your loss. We also lost our son to CHD when he was 5 months old. Very similar to you, he had several major heart surgeries but then died very unexpectedly.

I am currently 22 weeks pregnant again, and so can tell you about my experience so far. We were also told it wasn't genetic, and that while the risk of another occurrence of CHD goes up slightly when you've had one baby with it, it's only a small increase, from around 1% to around 2%, I think.

We were offered two extra scans on top of the standard NHS ones, with a fetal cardiologist. One was at 16 weeks and the other is this week, at 21 weeks.

I was put under consultant care straight away, I think partly because of the CHD history, but also because I've had two caesareans and am over 40. However, I am not considered high risk, as far as I know. I'd imagine that just your caesarean history would get you consultant care - it did for me in my last pregnancy.

I believe there's no reason you couldn't have a VBAC in your situation, but this is something to ask your consultant. I haven't had my consultant appointment where they discuss birth options yet, but in my last pregnancy, which also followed a caesarean in my first, they were willing to try for a VBAC up until 41 weeks overdue. I ended up with another caesarean.

I know exactly how stressful and worrying being pregnant again is, but remember that your chances of a healthy pregnancy and baby are good.

My advice would be to make sure that everyone you see knows your history. I've been telling midwives, sonographers, doctors, anyone involved, what happened to us. Although communication has generally been very good, it's usually best to make sure people know.

I am also intending to request extra checks at the birth - hopefully they'll agree to an oxygen saturation monitor and a doctor to listen to the heartbeat. Our son was diagnosed at birth, so that's a particularly stressful element for me.

Good luck.

Hi Artioo,

Thank you so much, this is amazing and reassuring that there are extra scans on the heart. Finn was picked at 20 weeks but like you said and experienced, it can go unnoticed so extra scans on the heart during the pregnancy would really help me and give extra chances to pick up on anything.

Very pleased to hear also that you had a fetal cardiologist do these extra checks as they know what they are looking for. When I had my 20 week with Finn, she said the heart did not look as it should and referred us but could not give any indication at all. Ended up getting a private scan on the same day where they suggested HLHS and were correct. It was confirmed at the hospital a couple of days later.

If all goes well, like you, I am not leaving the hospital until baby had extra checks done. I have a list in my head and so far, it has sats/heart rate checks, ECG, heart echo and if I am over the top I might ask for chest xray and bloods... I know its not nice to do bloods on a newborn but I would rather have that than a baby struggling and us not knowing why.

I would not mind at all if I were to have another c section. The only reason I would like to try a VBAC would be simply because the scar I currently have is from Finn and I cherish it. Although I get that that's not good enough for doctors to avoid a c section.

Where are you based?

So sorry for your loss. I cant answer everything (and each trust is slightly different) however i will try my best:

My daughter was diagnosed with a non genetic fetal abnormality at 12 weeks and died at 14 weeks in august. Im now 18 weeks preg with new baby so this is my current experience:

1. you should be considered high risk because you have previously had a high risk pregnancy UNTIL the antenatal care provider classes you as low risk. So right now you are high risk
2. you absolutely should have all scans on consultant care. This can be tricky so i would recommend getting to the gp asap so they can liaise with the department and book you in for plenty of time 3/4) i have a consultant midwife and a community midwife. Consultant mw is fabulous and i always have the same one (although dunno about birth plans etc). Community mw is shit and i am going to cancel the rest of the apps with her because as you have experienced, as i am not her 'normal' pregnancy case, she just seems clueless and a bit standoffish
3. never had a section so cant help you here although i imagine it would be down to the specific consultants opinion

Im in the nottingham trust if that helps? Pm me for any other info and i will try to help

Best of luck with your new baby xx

Hi Cassie, I'm in Oxfordshire.

In my experience the doctors were very happy for me to try for a VBAC last time - the risks are slightly lower, I think. They just didn't want me to go too overdue due to the pressure on the scar, and so I had a caesarean scheduled for 41 weeks, which is what ended up happening. This time, the gap between births will be almost exactly the same as you - 18 months. I'll let you know what they recommend this time once I've had the appointment this week.

I believe that the extra cardiac scans aren't standard across the NHS - I know of one other woman in another area currently pregnant after having a CHD baby who wasn't offered them. But if I hadn't been offered, I would have asked.

Artioo,

Im in Oxfordshire too. Which hospital are you under?

The John Radcliffe in Oxford.

Ah this is my local hospital too!

Did you get Nicky Manning doing the fetal echo for baby's heart? She diagnosed my boy and I thought she was great and really hope she can be involved again. She stayed after her clinic to meet with my husband and I the day after diagnosis and answered all of our questions.

Good to know you are having a positive experience at the JR, very reassuring :)

Yes, Dr Manning is doing both my extra scans. It's likely to be her for you too I think - they told me there were only two doctors doing the fetal cardiology scans, Dr Manning and Dr Archer, and I think he only does one day a week in fetal medicine. Dr Manning was very good at our 16 week scan, very understanding of the worry we felt.

And if you did get Dr Archer, he's lovely too. He was the main consultant looking after our son.

My DS2 had an undiagnosed CHD and I did get the cardiac scans mentioned. They also did a number of extra checks on DD neonatally. Good luck with your pregnancy!

Ah amazing, did not realise there were only 2 doing it but I thought Dr Archer retired last Christmas? Well, I guess either would be fine. Dr Archer had met Finn when we spent a couple of weeks in Oxford to establish feeding after we had recovered from the first surgery in Southampton and before we got home for a month.

I trust them both so this is great news.

What do you think of the midwives there? I did read different opinions. I suppose you can get that anywhere though. Finn was born in Southampton because we knew he needed surgery right away and we wanted to avoid a transfer for him as we did not want to stress him unnecessarily and for me because I was having a c section and did not want to stay behind in Oxford.

We also thought Dr Archer was retiring, but he's still there in some capacity apparently, or he was a few weeks ago.

My experience of the midwives has been fine so far. I've not had that much contact with the community midwives, just the booking in and 16 week appointment, but they were very prompt and supportive in referring me for extra care. For my previous two births, the hospital midwives were very good, no problems at all. Last time though we were transferred to Southampton straight after the birth.

Goodness what a small world! You must know pretty much all the healthcare professionals I know...

How did you go about starting your care? I have booked GP for 29th February when I will be 7 weeks and planning to discuss with him to see if he can refer me to the JR straight away so I don't have to see the community midwives at my local unit. I could actually self refer there so not sure what is best/quicker if you say they can refer me to JR too...

Yes, we must have encountered all the same people in Southampton! We were there for 5 weeks initially and then back for further ops later.

This pregnancy, I saw the GP in the first instance, but he didn't really do anything apart from I think request my standard 12 week scan (not the cardiac one). Then I saw the community midwife for booking in at 8 weeks. She referred me for the consultant care and the first cardiac scan.

weebarra, that's good to know your DD got extra checks neonatally too. That's what I'm hoping for.

Thank you very much Artioo for all the info and reassurance. Will you please let me know what they tell you about the 18 months difference between c section and this birth?

I think I am going to stick to my GP and ask him to refer me to the hospital. If I am 7 weeks at that point, the booking appointment should still happen between 8 and 10 weeks.

Best of luck for your pregnancy too, sounds like you are in really good hands. Can't wait for JR to have enough of all these ladies asking for sats checks and ecg...!

Really thank you xxxxxx

I will do, yes - my obstetrics appointment is on Thursday, so I'm assuming they'll discuss birth plans etc then.

Hi Weebara,

They say CHD is only 1% of pregnancy but goodness there does seem to be quite a lot of people unfortunately ;(

What extra checks did they do after birth?

Sorry, just saw this again! Sats, pulse oximetry, pulse checking (DS2 had a coarctation so there were differences in the pulses in his upper/lower body. No ECG or bloods. They changed the discharge procedures at our hospital after DS2. His symptoms were missed, he went into heart failure at ten days and we nearly lost him. So sorry for those who have lost a little one to CHD, so terribly sad.