Questions re late loss & Rhesus Disease

[sweetrainbow]

Hi,

I am completely new to this (never participated in a forum before) and am actually quite nervous about the whole thing but I have just got to a point where I have got a lot of questions in my head and need to see if there is anyone out there that might have some answers..

As a bit of background here is my story …. In August 2004 I had my DD. We fell pregnant after one cycle, I breezed through this pregnancy with no sickness or complaints and even breezed (well as much as you can) through a 2 ½ hour natural labour. Both my sisters have 2 kids each and experienced great pregnancies and quick labours (all under 4 hours) and we always joked about how we were made for having babies. My DH and I had decided that we only wanted 2 children and hoped for a 3 year age gap and so in August last year we decided to start trying again. We found out I was pregnant in October due June 15 this year.
Once again we had fallen pregnant after one cycle and I again had a great pregnancy until June 13 this year (39.5 wks) I went into labour, went to the hospital at 3pm and was told 20 min later that our baby had no heart beat and had died. We just couldn’t believe it. And I think when we are 60 we will still be thinking “I can’t believe this happened”. I had felt him move the day before and from the moment I woke on the 13th was having tightenings every 10 mintues so it just didn't cross my mind that anything would be wrong. Our Ob couldn’t see any reasons for this from looking at the ultrasound. Our DS arrived 2 hours later (at 5.15pm) weighing 7pd12. He looked just like our DD had when she was born except that he was not crying. To look at he just looked like a sleeping newborn. The OB said that the placenta and cord where slightly swollen and our DS had a touch of fluid on his hands and feet which they thought may help get some answers. We have since found out that he was severely anemic and he died from heart failure sometime in the 12 hours before he was delivered. They don’t know however what caused the anemia. Initially they thought it might have been from Rhesus Disease (I am B- he was O+) however they have ruled this out as I had no antibodies when I had my last blood test at 26 or 28 weeks. They have also ruled out parvo virus. The only other usual cause of severe anemia is a hemorrhage (the baby lossing too much blood) however they have also said that this is unlikely as I didn’t have many of his red blood cells in my blood. So we know how he died (heart failure), and that it was very sudden, but we don’t know a cause and more than likely never will. We were just told it was like lightening striking and it was extremely rare.

As a result of this I have also developed antibodies (even though I had the anti D injections at 28 and 32 weeks). My DH’s blood type is O+. We went back to see our OB today to get the all clear to start trying again and see what we are faced with. He basically has given us the green light (wahoo!!!) however he said that it is highly probable that our next baby will develop Rhesus Disease (due to the fact that I am now sensitized). He said that usually the first affected pregnancy (which our next pregnancy will be for the Rhesus factor) usually results in mild RhD and the baby is generally jaundice. They take blood tests monthly during the pregnancy and then if my antibody levels increase they do an amnio blah blah blah…… Sorry its getting a bit long.

So here we are 3 months down the track about to embark on pregnancy number 3 but I just have a few questions.
Has any body lost their baby due to severe anemia or something similar (or know of someone who has). If so just wondering if you found out the cause of this????
And secondly just wanting to hear from anyone who has had a pregnancy following sensitization (with the anti D antibodies) and anyone who’s baby developed Rhesus Disease during pregnancy to see how they coped, what treatment they received etc …….

I’m sorry this is so long.

I’m also just so sorry for all of your losses. I’ve had a bit of a read of the Pregnancy after loss forum and it gives me so much hope that if we are lucky enough to get pregnant again that we will some how get through it.

[Lissie]

Sweetrainbow,

I am so so sorry for your loss. Words cannot express my sorrow for you and your DH. I know nothing about this but i just wanted to pop in and say i am sorry.

Good luck with trying again and i only wish you the best.

[Mel1977]

Hi there,

I am so sorry to hear about your little boy What is his name? This is such a hard time, and I just wish no one would have to go through this tragedy.

There are alot of women here who have lost their babies late and I am sure they will all pop in and post to you. I lost my son in September '06 at 36w1d due to antibodies (I didnt know I had them until afterwards), but mine are anticardiolipin antibodies which caused a clot in the placenta. I really dont know too much about rhesus but there are some other ladies here who know everything about everything so hopefully they can help you.

Mostly I just wanted to say how sorry I am for you and your family, I understand the heartache this causes. The pain of holding your baby in your arms and knowing you will never get to what them grow, the pain of your lost dreams and hopes for your child

I wish you all the best with your TTC journey and hope that your dream of a healthy baby can come true in the near future. To help you with your journey you may like to pop in and introduce yourself here: TTC after Recurrent Miscarriage/Stillbirth or Loss after the first trimester Sept '07 - BellyBelly Forums ~ Pregnancy, Birth & Baby - you will find so much support there from all of us who have gone through, and still are going through, the loss of a baby.

Big :hugs: to you,

Mel

[daddy]

I’m so sorry for your loss. It must be so frustrating to have been looking forward to a new life and for it to just be taken away so suddenly. You sound very positive and are going on with things so well. I wish you all the luck with your new pregnancy.

[Jaycee]

Hi sweet
I just wanted to pop in and say I'm thinking of you.
I can't even begin to imagine what you are going through at the moment, I am so sorry you have to go through it.
I don't have any advice I can offer, I just wanted to let you know that we are all thinking of you and hope that you get the answers you need.
Take care
xxx

[nicjay]

Hi Sweetrainbow,

First of all I am so sorry for your loss - I have not lost a child under circumstances like that so I can only imagine how awful it must be for you

In my life pre-child though, I did work in a large pathology lab where we did testing of mothers with Rh disease, so I may be able to offer some answers from that side of things. I should emphasise though that I have been out of the field for 3 years now, so I may be a little out of date, and I am not a medical expert, but a qualified laboratory scientist, but I do have a bit of knowledge of the subject.

First of all I am wondering how you got the Anti-D in the first place seeing as you had the 28 week and 32 week injections? It is really rare to develop one if you have had the shots. Did they forget to give you another one after the birth of your DS? Seeing as he tested O+, you really should have had one within 72 hours of the delivery.

Also, have you had an antibody screen done fairly recently and was it positive for Anti-D? I ask this because the injected Anti-D can remain in your blood for up to 3 months after the injection and it is not possible to distinguish between it and a "real" Anti-D. Are they sure the Anti-D you have is a "real" one and not the injections?

As for testing during your pregnancy, what they usually do for a start is blood tests on you to check your antibody levels. They can actually measure them and see if they are rising or not. If they start to rise, that indicates that there is more than likely a problem and the baby's red cells are being affected. They should also test your partner's blood to see what Rh typing he is - and they can use that to see what the probability is that the baby will be Rh positive. It will be either a 50% chance, or a 100% chance.

They can also look at your amniotic fluid to get an idea of whether the baby is being affected as well, but obviously this means amniocentesis.

If they think the baby is being affected, they then can treat the anaemia with a blood transfusion in the uterus. I *think* they do it via a needle into the baby's cord and it is done using an ultrasound to make sure it is going into the right place. At the same time they will test the baby's blood to see what Rh group it is (of course if you get to this stage it is generally Rh positive) and if the red cells are affected. They will also test the baby's haemoglobin levels (measuring anaemia) before and after the transfusion. You may find if you need this treatment done and you don't live in a major metropolitan area, that you will have to travel to a large hospital to have it done - not sure about other states, but this is the case in NSW. A lot of smaller hospitals just don't have the facilities and from a lab point of view, a lot of smaller labs just don't come across Rh Disease cases very often.

I'm pretty sure they keep doing this on a regular basis until you deliver - you'll probably be induced early, especially if they think there are problems. Also, the baby will more than likely need more blood transfusions after birth and maybe after a month or 2 as well. Once the Anti-D antibodies are cleared out of the baby's body - I think this can take up to about 4 or 5 months - the baby should have no further problems.

In my time working in the lab (10 years) I saw plenty of Rh disease success stories and very, very few that had an unhappy ending, so I believe your chances of having a healthy baby are great with the correct treatment. It is not like the old days where these babies just couldn't be saved. Just make sure you keep talking to your ob and ask heaps of questions if you don't understand what is going on!

Anyway, I hope this has all helped Hopefully someone else here that has actually been through this might be able to help answer your questions as well.

All the very best for TTCand I hope you are holding a new baby in your arms really soon.

[Lisa]

Sweetrainbow,
I am so very sorry to hear about the loss of your beautiful baby boy.
I truly hope you can find answers to your questions... there are a lot of very knowledgeable people on here, who I am sure you will get loads of help, support and advice from.

[Lynn]

Sweetrainbow - I am so sorry for the loss of your precious son Like Mel said, I wish that no-one had to go through this terrible heartache. I lost my son last November at 37 weeks to a cord accident and I too couldn't believe that it happened. Like you, I think for the rest of our lives we will always be asking the question - why? I'm sorry I can't answer your questions but hopefully someone else will be able to. I just wanted to post and say how sorry I am that your little boy grew his wings. Do you name him?

I hope you can find some answers soon and I wish you all the best in your TTC journey. Pop in and visit the girls in the TTC after stillbirth thread - they are all wonderful and supportive.

Take care of yourself :hugs:

[sweetrainbow]

I just wanted to thankyou for your replies and words of support. You know its ridiculous because I feel like an intruder here as if what I'm writing is about some one else and not me because its just something I never at all thought could happen and at times still struggle to believe has really happened. We named our DS Charlie Edward. We are doing ok ... most of the time. In the last four weeks I have returned to work, my DD turned 3, my sister had a baby girl (her third), last week we finally had the placement of Charlie's ashes at the cemetery (it took 12 weeks to get the granite/plaque), I had my birthday (turned 31) and fathers day and we went back to the Ob yesterday which was the first time we had spoken to him since two weeks after his birth. I was so anxious and stressed about all of these things and they were all such emotional days and now that we have gotten past them I feel like a huge weight has been lifted. When his ashes were placed we had a little ceremony and we read a poem about loving and missing him always but having to move forward and Millie (my DD) released some balloons and since then I have felt more positive about the future (again most of the time anyway). Its been really hard trying to explain it all to our DD also when we really don't understand our selves. I often think she sort of gets it and then she will come out with something like "when charlie comes home can we ...."

Megsmum - thank you for that information. I have really struggled to understand how I could have become sensitised also but our Ob said that even if you have the anti-D injections there is still a 0.02% (I think that is what he said) chance of developing the antibodies and something about how much blood crosses as the injection only covers you up to a certain level????. As soon as I delivered Charlie I had a heap of blood tests and they came back and said that I had the anitbodies and I wasn't given an anti D injection after his birth which I guess was because I already had the antibodies (I did have one after my DD's birth though). The Ob said that one of the reasons they know that Charlie had only just died was because my anti-D levels were really low which means my body had only just started to recognise the foreign blood??? I haven't had a blood test since the day I delivered. I had never heard about your comment re the anti D in my blood being 'real' etc which was really interesting. He basically just said yesterday to come in as soon as we find out that we are preg and have the blood screens done then as the levels can change over time but they will never disappear.

[hannah4kids]

I'm terribly sorry for your loss. I can only imagine your grief and bravery for trying again. I have four children and my last two children with Rhesus disease. They were monitored and I had monthly to fortnightly blood tests and ultrasounds but was lucky enough to have a boy induced two weeks early (now 4) and a little girl full term delivery ( now 14months). My son did have jaundice and was in phototherapy for a day but this can often take place without the rhesus risks. I am now 34 weeks pregnant but the rhesus levels have increased and I am on weekly ultrasounds and blood test and hopefully trying to avoid a caesarian delivery but even these escalations have only just devloped since 30weeks. Usually the symptoms increase in severity with each subsequent pregnancy but I have not had to have amnios or itransfusions so consider myself very lucky in this regard.

The ultrasounds Measure the baby's blood flow which can indicate the rhesus disease is affecting them and at a certain level it is considered better to deliver the baby than have it endure these conditions longer inutero. I have heard of women also who have had two or three successful pregnancies after have inutero transfufusions for the baby. It has to be said though that these do have risks. I think transfusion have an 85%success rate ( but these often need to be repeated to get you through to a magical 34weeks or more) and then there are health risks for premature babies also even though statistically the outcome of a baby born after 34 weeks is said to be that of a full term baby.

Hope this is of some help, sorry for jumping all over the place but I'd say this pregnancy would be pretty safe in terms of the rhesus disease as long as you are monitored carefully. I have been considereed a high risk pregnancy with all three of the babies epxposed to the rhesus antibodies and this means that the hospital is always on top of any changes.

Best of luck
Hannah

[sweetrainbow]

Hannah thank you so much for that. I'm sorry it has taken me this long to reply but we have been away and I have only just had the chance to jump back on the computer.

I just wanted to say you have lifted my spirits so much. Our Ob said that the first affected pregnancy is 'usually' only mildly affected but after losing our DS it just scared me so much that there was a chance the next baby could be sick. I read in a book once a comment something like statistics mean nothing until you become one and that is so true.

I sincerely hope that every thing is going well for you and your baby and that your levels have not increased any further. Sending you a big hug and thanks for giving me some hope to grab on to.

[tempus moriendi]

I don't have any medical information to add, but wanted to offer my emotional support. I'm keeping you in my prayers.

[angelicdragon]

Sweetrainbow
I am so sorry for the loss of your little boy Charlie. I can't help you with the medical problem you have but as another Hobartian I just wanted to reach out and send you a
I lost my little girl at 31 weeks back in April 02. Cord complications. I am now pg fagain. We have had one child since Annabelle but many m/c. Jamie Brodribb has been an awesome OB.
If you want to chat in real time I am on msn most days.. judy3264@hotmail.com
hugs hun
Jude