This was my first pregnancy. I knew that I was rhesus negative but I also knew that having the injection stopped all those issues, so I didn’t really worry. At my 28 week blood test prior to having the injection, I was told that they had found anti-D in my blood already. It was a very low amount but it was there. I was asked by every midwife if I had bled in my pregnancy, had a miscarriage previously, or had a bump but I never had any of those things. No one could explain to me where the anti-D antibodies came from. I even had one midwife tell me that maybe it was left over from my mum having it when she was pregnant! My initial bloods were sent off to check the amount of antibodies in my blood. The results took 3 weeks to come back since this was over Christmas. I kept calling and chasing down my results and was told by a midwife to stop chasing as it is nothing to worry about. Finally, after 3 weeks I was told that I had a very low amount but I should have now been having blood tests every 2 weeks. Now I was a week late and nobody had ever told me that I needed more tests every time I called and asked about my results. When I had the blood test, the midwives ticked the wrong box, so only enough blood was taken for the identification and not enough to quantify. I wasn’t told about this until I came in for my next blood test – this meant that it had been five weeks since my initial positive test and blood levels. Finally after a week I got a call saying that my levels had now jumped to 7, and I needed to come in that very day for a scan.
I had been told for weeks that this was nothing to worry about and that since this was my first pregnancy the antibodies wouldn’t cause issues. I was very stressed. I called my husband so worried and made sure he could leave work for the scan. He was very confused too as we had trusted that all would be okay and suddenly everything had changed. I have no idea if my levels had slowly been increasing or if there had been a quick jump. At my first scan, I finally felt reassured. I had a screening midwife who really knew all about the anti-D antibodies and I finally had a consultant. I have discovered through all of this that standard midwives really are not aware of HDFN etc. I started having weekly scans and was induced at 37 weeks.
Hugo was born and a cord blood test was done which failed, so they then did a heel prick. For some reason during this time he was not handed to me which I still don’t understand why! After 50 mins of him just in the cot in the room he was taken under intensive lights. I didn’t hold him for 44 hours which was the hardest thing. He had IVIG on day 2 to bring his bilirubin levels down. We spent 11 days in neonatal (NICU) with a constant yo-yo of bilirubin. Whenever we decreased lights, his levels then rose and he’d need lights again. This was the hardest part. I wish I knew this could happen. One night he was with me off the lights and at 4am he was taken back to neonatal as his levels had jumped so much. During this time haemoglobin levels had been absolutely fine but at 4 weeks old his fortnightly blood test showed a transfusion was required.
I had naively thought that we were okay and just would have blood tests until 3 months. The transfusion hit me hard as he had no signs of anaemia. From that transfusion I couldn’t relax. My anxiety was constantly heightened and looking out for any signs that his levels had dropped again. We are now off the folic acid and awaiting his final blood test to be cleared of HDFN.
After 3 years trying to conceive it upsets me that conception, pregnancy and then birth were troublesome and I’m very anxious about future pregnancies as subsequent pregnancies can be worse. I’ve had issues with family members making jokes of “well it was your blood that attacked him” which I didn’t need as I already felt extremely guilty and worried about things like, ‘did I miss a knock to my bump?’ However my consultant has said that the antibodies were caused by a silent bleed. I’ve been told that for my next pregnancy to call the specialist team straight away and they will test my husband to see if there is a 50/50 or 100% chance of the baby inheriting the antigen and being affected. I still need to find the confidence to go through all of this one more time, but at least next time I will be more prepared. I know about the yo-yoing bilirubin, I can expect the drop in haemoglobin, and I know that I will have a specialist team that understands. I hope a bit more awareness of alloimmunization and HDFN is made and midwives will have more understanding about this disease. The false hope that I was given at the beginning actually made it harder when we had a difficult time
I would like to ask the medical community to spend more time learning about HDFN so that outdated myths aren’t being told to patients. There needs to be more information out there about HDFN in general. What is available on Google seems quite outdated. I would also like for midwives to learn more about it. If I could ask one thing of the scientific/research community, it would definitely be to conduct new research. I would like researchers to take a fresh look into how antibodies can be created looked into because no one knew how this happened to me. I would also like some new studies that looked into if 28 weeks is the best time to give the anti-d injection. I understand that in general this is the best time, however I know women from a support group who created their anti-D antibodies just before. I didn’t have any at 26 weeks but did at 28 weeks
I would tell other moms dealing with alloimmunization and HDFN to take every day as it comes and sometimes it’s better to be a bit more realistic and cautious after the baby is here so that you don’t find it too much of a shock if he needs long lights treatments etc. Also advocate for yourself and your baby. I had one nurse try to tell me after his transfusion he didn’t need anymore blood tests booked. Luckily I pushed for her to confirm with the consultant and I was correct that blood tests needed to continue still.