Rhesus Negative

I’ll never forget the day when the midwife/nurse said to me before my D&C (Dilation and curettage) surgery from the missed miscarriage,

“Did you know you are Rhesus Negative?”

What the heck is that. This was the beginning of my Rhesus Negative journey that became an obsession or perhaps a focus through my grief of losing my much wanted pregnancy without any warning. It is still an obsession!

No I didn’t know that. What does that mean then? Why is this relevant now? Why are you telling me this now?

It turned out that I have a blood type that will cause issues in future pregnancies unless I have an anti-D injection. A what?

So I text my sister and contacted my Dad wondering what blood type they were. It seems knowing your blood type is not easily known unless you give blood or you happen to know. But if you are a pregnant Mother it is something you should know after your booking appointment bloods. I didn’t  get informed after my booking appointment.

Not that it would make any difference to my pregnancy until I reached a certain stage of 28 weeks when you first recieve the anti-D injection. Something I feel should be given sooner if you are at risk.

I actually didn’t  want the injection in the first place.

If my baby has the same blood type as me there would be no problems. If it is not the same blood as me then problems can arise and your body can fight against the baby (usually in future pregnancies). It can effect the present pregnancy (as was a possibility in my case) in rare cases. For example if the anti-D failed or you declined the anti-D the body builds up antibodies (like an army) to basically attack the foreign body (baby).

It is unlikely in a first pregnancy unless you have had a situation such as a miscarriage, bleed or trauma and blood has mixed by crossing the placenta. When I had surgery it was important I received the anti-D injection to prevent any issues. I did have the anti-D after my 1st miscarriage.

My question is, why give it at 28 weeks and not before?  The risk is apparently low that the babies blood crosses the placenta but it can happen. Especially if there are any traumas or a bleed you have to have the anti-D injection. I am a walking case of this.

But the heart starts beating at 3 weeks so surely there is a risk of blood crossing and you need it sooner?

I had a missed miscarriage that was spotted at 11 weeks. If I’d of had this at 7 weeks for example and the bloods mixed then would I be at risk? I didn’t have any sign of a missed miscarriage, no bleeding or pain but I did have an inner feeling but physically no bleed. They say not to have it before 12 weeks. Why – because of cost against spontaneous loss?  If I hadn’t of had the anti-D within three days then I was at risk of my body building up antibodies that would of caused issues when I fell pregnant again.

So if you don’t understand the above –  my point being this whole rhesus negative and preventing it has been a huge challenge for me.

After the first miscarriage I was so obsessed with my blood type I wanted to know what my lost pregnancy was but I would never know. Neither would I know with my 2nd miscarriage. So I decided if I at least new my partners blood type that would give me a head start. But he is scared of needles and we would have to pay private or he would have to give blood.

In the end he agreed after my months of distress and the 2nd miscarriage and so I wrote to his doctors to explain my predicament and they helped us.

He is a positive blood type which was the opposite to me and so I knew the chances of my baby being positive were high. I was convinced my blood type was the reason for my losses.

Medically they say this can’t be because I tested negative for antibodies which I do understand that. However if my body doesn’t like a foreign body maybe there is more to it than they think. I know if my body had of built up positive antibodies then future pregnancies could result in miscarriages. But my first miscarriage I did not test positive for antibodies so it goes against my view. The 2nd miscarriage I did not receive any anti-D because I had it at home naturally. But did bloods not mix?

Eventually I relaxed on my blood type and I fell pregnant again. This time armed with knowledge. I already knew I was Rhesus Negative and so I challenged why I couldn’t  have the injection sooner just in case. I didn’t need to have any anti- D unless I had any trauma or sign of a bleed.

My 28 week appointment was in January 2018. My consultant had said there was maybe a chance I would just make it in time for the new test –  fetal rhd genotyping that could take my blood and predict 99.9% my babys blood correctly.

I was so excited because the issue I’d had was that  I didn’t want any Anti-D injections but I knew the importance of them. The reason why is below.

DOCTORS APPOINTMENT

After the 1st miscarriage I’d not felt right after the Anti-D. I went to the doctors and she basically told me I had animals blood in me. It was live blood. I knew it had been donated but I didn’t realise it was an animals so I questioned her and the appointment was difficult and left me very distressed and confused. It is in fact taken from human blood. I know we all evolve from the animal kingdom but the thought of animals blood in me made me feel ill.

This Doctor had also offered me some extra blood tests after telling me that my egg supply was no good. I had the bloods done and she rang me personally numerous times to tell me about my results but in the end not one doctor at my surgery could explain what they meant. Neither could she.

This was the start of my obsession with having bloods taken to see how I my range changed.

Because I had complained and because they couldn’t really answer my questions I ended up being able to have my FSH and PROGESTERONE tested as and when I required based on my ovulation. I even read my own results. I went from having a bad egg supply and not being eligible for IVF to having a good result and being eligible for IVF. I went on the IVF list but I knew it was a matter of time before I conceived naturally. I had meetings with the doctors and consultants challenging with them my issues.

So in some ways I have to thank the Doctor who freaked me out and my practice for allowing me to have my bloods taken to pacify my mind because what I learnt is that they follow ranges and guidelines (text book). Depending on the individual these can and do change. I know because I have been at both ends of the spectrum.

I know when I was highly stressed my egg supply indication was not positive. But over a period of months I changed my lifestyle and my egg supply became positive.

By accident my oestrogen levels were tested once instead of progesterone and according to text book range they were high. Oestrogen (esteridol) levels range were to high really in the medical world for me to get pregnant  and yet here I am. High esteridol levels and pregnant! Nothing is text book. We are all individuals. Of course text books play there part in life but no one truly understands conception. It’s one of lifes greatest  mysteries how we  are created and create life. Of course in simplistic terms we have an egg and a sperm but it is incredible how life is born.

So back to my Rhesus story. I didn’t qualify for the test as it was still being developed so at 28 weeks I spent a good hour querying the anti-D injection with two nurses.

In the end I had it. They can’t pass their own opinions and they are mostly trained even if they did have an opinion to rely on text book. So the answers are the same.

I followed the guidelines and I am glad I did.

Not long after because of fear being placed in me I visited triage with what I thought could be the tinniest pin prick worth of blood. I can’t be absolutely certain it wasn’t a stain in the toilet tissue as it was minute.

But as guidelines and fear had been instilled in me I had to make contact. I’d also had limited foetal movement but I’d been under a lot of stress that day.

I left the hospital at 3.30am. I’d said I didn’t want the injection to the midwife but she turned up with it anyway. The consultant even said I didn’t need it as it was days after my 28 week one. But the midwife was so nice and answered my questions that after her argument with the consultant and telling me it cost £47 for each one and that if I didn’t want it she could put it down the sink I decided just to have it. I was tired and had a bad stressful day. I think I should of said NO. It’s not like me to say yes to something I don’t agree to.

So that was the 2nd injection. The night after I had a proper bleed and I rang up and of course it was requested I go in for another but I declined – surely I’d  had enough!

That was that.

Three weeks ago I saw a consultant after my growth scan. I saw by pure chance a blood transfusion packet on the table and on there it said “patient tested positive to antibodies”.

What was that? I’d had the injections and followed guidelines but I was positive.

The consultant explained quite casually that it was probably the anti-D but they were not 100% sure so I had to have more tests done. Not to worry.  I didn’t get it. I still don’t. Not to worry.

Have you researched rhesus disease. This is my life growing in me and I am so close to the end but don’t worry?

So I queried him and I got the usual drawings on paper of what happens with the build up of antibodies. What they thought may of happened was the anti-D injection had given a positive false result. But how can anti-D do that when it is meant to keep you negative? Had I been given to much? Is it like the flu virus where they give you the virus – apparently not. I was offered an INDUCTION. I was 37 weeks and I said NO.

Another tricky appointment left me feeling very confused and I cried when I walked out of that room. I was so upset that I’d followed the text book and still tested positive.

I rang my partner in tears. The Doctor had talked about induction at 37 weeks. Just get the baby out it’s ok at 37 weeks he said. I would be fine, baby is fully formed he said. Induction talk came and when rejected went very quickly. How can a Doctor suggest it in this way I find shocking. I was vulnerable but thankfully strong. I fought for my baby’s rights to stay until he/she is ready. I was so shocked with the worst case scenario. I went home in tears and we were all confused. I had the leaflet they gave me which stated jaundice, anemia and worst case even brain damage and death. I couldn’t  cope. I was also laying to rest my friend on the Wednesday and had to prepare a speech for him. It was Monday night.

It was a tough few days researching and trying  to find answers to why I thought I’d  been overdosed on anti-D.

Luckily though, Tuesday, the day after the dreadful appointment I  was going in for the genotyping blood test and I was seen by a fabulous nurse Maria who explained everything in a much more positive light I left feeling elated, calm and balanced again. Communication is crucial and how that is delivered is really important.

I was the first female to have it done in the East Lancashire area. It is something I am so passionate about and what this now means is that instead of having Anti-D automatically if you are Rhesus Negative your babies blood is tested from your  blood. My next question is how the heck do they do that when antibodies build up if your bloods mix?

The night after I saw the doctor it occurred to me that they must of known about this sooner than just that day. The last appointment 2 weeks earlier the consultant there said they needed to do my bloods fortnightly. I didn’t  question it as I thought it was routine which it is when you have positive antibodies that I didn’t know I had. The consultant then requested my midwife did them. My midwife is a caseload midwife so she visits me at home.

That day I’d said I’ve had enough of bloods and she couldn’t understand why they had been requested. But in the end she did them.  It suddenly occurred to me to ring Burnley and ask them when I first tested positive. Can you believe my results tested positive in January for antibodies being my blood and no one had informed me.

In my white book it clearly states anxious about anti-D and antibodies and yet not one consultant, midwife, doctor etc had mentioned it to me. I’d asked how this had happened and the answer was they probably presumed I knew.

Well I didn’t know and it was a shock. When I had seen Maria she actually looked into my results and showed me the range my results were at. Why the Doctor didn’t  do this  I’ll never know. The results from 2 tests indicated a decline in positive antibodies meaning it is likely to be passive (anti-D injection) as opposed to immune (my own bodies defence army). But one result we needed could not be tested because my caseload midwife had put it in a tube that had expired. Very  frustrating for me. This was weeks ago and the blood department had contacted them the same day to repeat but nothing.  More bloods were done.  That was 2 weeks ago. Two days ago I received a letter explaining a mistake had been made but not to worry there were no concerns (highlighted) and to get the midwife to repeat (this Wednesday).

So this no concerns that actually was a concern because no one knew for sure if it was passive or immune had only just got to me weeks later. This happened with my iron tablets to. I was tested for iron by my caseload midwife. I felt Ill. I wasn’t seeing her for 3 weeks when she would have my results. I happened to have a growth scan and so asked them 2 days after. I was anemic so prescribed iron and within days felt so much better.

I got a phone call 4 weeks after the bloods from my doctors surgery telling me not to worry but I’m anemic or bordering on. Just think how much iron loss and how bad I would of got hadn’t I of been proactive and asked for my results. It amazes me the amount of time it takes to communicate these things.

Why does the caseload midwifes not check a couple of days later for their patients. It baffles me.

It surprises me when I have been to antenatal, had midwife, doctors appointments and health visitors how much they don’t extend there interests outside of the text books and see what new research is out there.