Rhesus Disease

[Shaunieh95]

Hi ladies.

I'm just wondering if anyone has any stories about rhesus disease.

I am rhesus negative blood type - During my first pregnancy towards the end I started producing anti D antibodies so ended up with weekly blood tests to track this.

I was told this wouldn't effect my first baby (which it didn't and I ended up being induced anyway for a separate problem)

However I am pregnant again and have been told that there is a possibility my baby may contract rhesus disease as I created antibodies in my first pregnancy. I have my blood screening tomorrow to see whether or not I have in fact created the antibodies again and will then have extra tests to see if these are attacking baby's red blood cells.

I'm just trying to prepare myself and I can't find any stories online, has anyone had/have this? Did you need inducing? Did baby need blood transfusion/ light therapy?

I have so many questions and no answers 😩.

Thank you in advance xxx

2 of my sisters are Rhesus -ve (it's never talked of in our family as a disease ). We suspect our grandmother was Rh-ve because there was a gap between our father & our aunt and several miscarriages apparently.

But nowadays it's very simply & easily and routinely treated - one of my sisters had the tests and a series of injections to deal with the antibodies. No miscarriages; healthy pregnancies & gorgeous healthy live babies! (3 of whom are now over 6 feet tall, where did the time go ...)

Good luck tomorrow, OP. I don't know much about this but DH was a rhesus baby. His older brother wasn't affected at all but DH needed a full transfusion when he was born. However this was fifty years ago so I'm guessing things have moved on since then. If it's any consolation DH is a strapping, healthy 6 footer. xxx

Thank you both @BeansandRice & @Lovetunnocks your replies are both very much appreciated!

I already know I am rh negative and my 1st is +. I think there is a slight difference between being just rh- and rhesus disease unfortunately for me 😩. I had all the injections etc with my first however this wasn't enough to protect me against the antibodies and my body started creating these anyway meaning there's a high chance baby no2 will contract rh disease 😕.

And I'm hoping that it doesn't come to needing the transfusions, I know I will be induced anyway due to blood pressure issues/ heart disease in myself / my 1st having IGUR and low growth hormone (I am the WORST pregnant person) so this is just another to the list. I've got my fingers crossed for tomorrow that my body may not have created the antibodies and if I have that they haven't crossed the placenta.. however long road to go yet as only 14 weeks! Only time will tell and I suppose the hospitals these days are amazing! Xxx

@Shaunieh95 hiya. I am rhesus negative and was sensitised during my first pregnancy. I'm afraid what @BeansandRice says is only correct if you didn't produce antibodies in your first pregnancy. As you did, there is no injection to deal with the antibodies; It's too late, you already have them. You shouldn't have the anti d injections this pregnancy as they will cover up any increased antibodies that are affecting the baby.

You should be offered a peripheral blood test at 12-16 weeks.this is blood from you that they test to check if the baby is rhesus positive or negative. If its negative, they will still monitor you a lot in pregnancy, but there should be little risk to baby. The reason they continue to monitor you is that sometimes the peripheral test is incorrect.

If baby is positive then you will have much closer monitoring both of blood and scans of the baby and its heart, abdominal wall and the middle cerebral artery of the brain. If the pressure in the brain gets to high, or there is s build up of fluid in heart, lungs or abdomen or an increase in antibody titres in your blood they will consider an inutero blood transfusion. I had scans every two weeks which went to weekly when they started to see changes.

My DS was badly affected and the transfusion failed. He was born by urgent section at 32 weeks due to this, so they could treat him. He had blood transfusions and phototherapy at birth and for weeks after. He is now a strapping 12 year old.

My next pregnancy my peripheral blood showed baby was negative and I was closely monitored under fetal medicine consultants and he was absolutely fine and born at full term.

This is really scary for you. I don't know where you are located but I was under the care of Kings College hospital and the care was outstanding, even if I had to travel to London for it.

If you have any questions please do ask. There is a good Facebook group called "rhesus disease" that will help too.

My main advice is to educate yourself about this thoroughly. It's very rare to be sensitised nowadays and people (including midwives and obstetritians who aren't specialists) hear that you are rhesus negative and just assume that you need anti d injections and that's it. It really isn't that simple.

Interestingly my ds1 also had IUGR and was born at 30 weeks!!

Thank you so much @Whyhaveidonethis !!

I think the blood test you are talking about will be the test I am going for tomorrow as I had my regular booking bloods done at my scan last week.

It is very scary and I suppose all I can do is hope and pray that baby is fine! So sorry you had to go all through that I couldn't even imagine 😩. I will join the Facebook group and have a read. I cannot sleep for worrying and baby's dad just doesn't seem to understand just how serious this may be which is stressing me out more as making me feel like I am being dramatic!!

I had weekly Doppler scans weekly bloods and biweekly growth scans from 26 weeks up with my first I was also in the day unit every other day to be put on the monitor and tochave blood pressure checks. I was hoping his time round would be easier however i think I may be in for another rough road!!

That is a very strange coincidence! Wonder if IUGR has any links to antibodies, seems interesting!

Thank you so much again for your reply, I'm kinda expecting the worst in a way although hoping for the best if that makes sense. At least if I a well aware of what COULD happen I may be somewhat prepared. However an early birth and a long stay in neo will not be what I need when my little one is only 14 months and I'm already 14 weeks!!!!

Xxx

Sorry i forgot to add.... @Whyhaveidonethis I love bang in the middle of Leeds and Wakefield I am currently booked at my hospital in Wakefield as this is easier for me to access however fetal medicine is over at the Leeds General Infirmary so I can see a change over hospitals in site. X

Hiya @Shaunieh95, I'm so sorry you are experiencing this. Yeah I forgot I also had every other day monitoring and at the end a scan on the day inbetween. It was the most awful pregnancy in so many ways. I was continually terrified that DS2 would die, but they are amazing now and can do such good monitoring that it will be under control. The hospital knew I was terrified and they were outstanding. The scans and monitoring were done in my local hospital and I had to travel to London for the transfusion. When they decided that baby needed to come out urgently but not emergency, the local hospital had no space and so the consultant offered to drive me to King's himself.

Fingers crossed baby is rhesus negative and you can relax a bit. Do you know if DP is heterozygous or homozygous rhesus positive? If he is heterozygous then you have a 50/50 chance of a negative baby, if homozygous then it's a guaranteed positive baby.

Good luck. Please do let me know how you get on. For the record my titre levels got to 27.4 by the time baby was born. As soon as they got to 5.0 they stepped up the monitoring. DS3 my levels never got above 2

I had the anti D injection after my 3 pregnancies. Thankfully had no bangs or falls during pregnancies so all healthy. All my kids are ó positive and I am. Ó neg.

@Whyhaveidonethis wow your consultant was amazing! Im going to ask to speak with the consultant tomorrow when I have my bloods and just have a chat about the possibilities for baby. I have no idea on DP he was never tested all I know is he is rhesus positive and we only knew that because DS is O+ and I'm O-.

I will update tomorrow after my test and hopefully my results will come back within a few days. Until then I will try keep calm 😩.

Thanks again it helps a lot getting to understand it more xx

Good luck! I was told that if you ask to be seen by the consultant then they have to let you, although you may have to hang around for a bit (sometimes hours). My consultant was Professor Nicolades who it the top fetal medicine consultant in Europe. At his clinic, people flew in from Germany and Spain to be seen by him. He gave me his email address and would ring me in an evwing to answer any questions.

nieuws.kuleuven.be/en/content/2019/patronsaintsday-kypros-nicolaides

This is my doctor. He is amazing, if you are worried ask to be referred to him.

This has really worried me too as I'm O- and DD is O+. I have no experiences myself as of yet, but a friend of a friend of mine experienced it. She had a miscarriage and never got the injection, so in her second pregnancy the baby was also Rh+ and I believe they had to induce her early and the baby had jaundice (think that was all, but not sure). In her third pregnancy the baby needed a transfusion in the womb, I think, and also that one was born early. Her fourth baby was luckily Rh- and everything went smoothly and born to term. Will keep my fingers crossed for you and that this one is Rh-!!

How did your appointment go? @Shaunieh95

Hi @Whyhaveidonethis!

Sorry I'm only just posting I had to go back to work after the hospital 🤮. I had my all bloods done however consultant was tied up on delivery ward and I needed to head back to work.

Tried speaking to one of the midwifes who just continuously told me I had antibodies in my blood in my previous pregnancy due to my first anti D administered (anti d antibodies were found weeks and weeks after this and continued to rise without having anymore anti D so i know she was incorrect) I feel like it's not taken very seriously to say how complicated it can make your pregnancy! I was sat trying to explain it to a midwife?!!! Surely they should be well knowledged on it even if it's relatively rare? Anyway, appointment with midwife next week and I will be consultant lead which I knew. They will call me in a few days with my bloods to see where we from there

Thank you @Sofin it is very scary however I have all fingers and toes crossed that baby is rh- !! I'll be doing my prayers tonight!

I'm rhesus negative too, DD is the same and I'm 30 weeks pregnant.

I had a fall at 25 weeks so had to have anti D, I then went for my normal bloods at 28 weeks and was told I had antibodies. The midwife I spoke to just told me to go back in 2 weeks for more bloods and then if I need another anti D they will give me it.

That is all I know and the rest I've googled and it is causing so much stress for me and I'm so worried I'll have to have baby early 😔

Hopefully when I go on Friday they'll explain it a bit better.

Aww @ashleighsmilie88 sending hugs. Is this your first pregnancy? If so then I wouldn't be too worried as usually it is only subsequent pregnancies that get rhesus disease. I had the antibodies with my 1st and as far as the antibodies were concerned he was fine. I did end up being induced but this was due to his growth and my placenta not the antibodies. Fingers crossed your titres will stay low x

I am B Rh-, husband is + as are both children. Apart from having the anti D twice, I can honestly say it didn't affect me in the slightest.

people seem to be getting confused between just being rH neg and having actual rhesus disease.

There is a test that is done that tells the difference between prophylactic anti D (those from the injection) and anti-D that has been created by your immune system. It's normal to have prophylactic anti-D antibodies in the blood after having the anti-D injection. There's only concern if the antibodies have been made by your immune system. OP I'm sorry the midwife didn't appear to be aware of this, it must have been very frustrating for you.

The titre testing will say how high the levels of antibodies are in your blood, the lower the level the lower the risk to your baby. It can take a few days for results for titre testing to come back so hang in there and fingers crossed they're nice and low

I am completely clueless to be honest, my first baby is rhesus negative, same as me but my partner is positive.

I'm hoping the antibodies are there because of the previous anti D and not from me, the thought of baby having rhesus disease is scary.

Hopefully the midwife can shed some light for me on Friday.

@Whyhaveidonethis Hi, I just read what you wrote about heterozygous and homozygous. This is the same as other types of dominant/recessive genes, isn't it (or am I off)? If so, I think I've done the math and can say DH is heterozygous. His mum is A+ and he is O+, but his sister is A- and needed an injection after a miscarriage. We don't know what his dad is, but he must be O-, mustn't he? And that must make DH heterozygous. His mum must be heterozygous too, as otherwise DH's sister wouldn't be Rh-? Maybe I have it all wrong..

@Shaunieh95 it certainly sounds like he is likely to be heterozygous then, so baby could be rh-.

In my experience, midwives know nothing about this disease. I found myself educating so many of them. They all wanted me to have the anti D, even though it messed up your blood tests and increases your titres, and has no actual affect. It's the same as vaccinating some one who already has measles, it is not going to help.

@Bambamber you are right people always get confused with this. Being rhesus negative is not the same as rhesus disease. Op, hower has rhesus disease, as diagnosed in her last pregnancy and confirmed by her bloods.

Yes @Whyhaveidonethis I have all hope and faith that baby is rh-!!

Only time will tell. It is SO frustrating in regards to the midwives I don't understand why they are so uneducated on such a serious thing.

Anyway, time will tell once my results are in I will keep you updated!

Thank you for the support x

Former Biomedical Scientist in Transfusion Science.

Rhesus disease is really unusual now because of the prophylactic Anti D program, and this is one of the reasons why midwives are not as knowledgeable as they could be.

For the genetics..... I will try and explain using my family. I am heterozygous (Dd) and do is my husband (Dd). Our children can either be homozygous positive (DD), heterozygous positive (Dd or dD) or homozygous negative (dd).

So even if you are both heterozygous your child can be Rh negative (in fact, my daughter is).

The labs in your regional blood transfusion centre (I think cases such as you go to the specialist centre rather than just the hospital) will be closely involved in your case and are highly skilled and knowledgeable- they will be looking for other antibodies you may produce, quanting the level of anti D you have and making sure there is blood available for you and your baby. NHS BT are really good at this kind of thing.

I'm sorry I can't give more information about treatment and outcomes - as I am sure you appreciate it can be very severe, however with good monitoring and all the antenatal care available now, things are far better than they used to be. I'm sure you will do so anyway, but make sure you keep all your appointments and be sure to get your blood samples frequently!

Best of luck