I was in labour with my son in 2017 when the hospital noticed that I had anti-c and anti-E antibodies. Fortunately my son was unaffected, so the doctors assumed I’d had an unknown bleed in the later stages of pregnancy. In 2020, I fell pregnant with my daughter and we had my partners blood was tested. The results came back that he was homozygous for the c antigen, and negative for the E antigen. There was a query over why anti-E would have suddenly appeared in my first pregnancy, so I was treated as if the baby was positive for E too just in case dad’s antigen screen was wrong.
My bloods were monitored in line with the RCOG guidance, but there was only 1 midwife within our Trust that knew about antibodies. This meant that I was often left explaining to other providers what needed to happen. I got very used to advocating for my baby, and the providers were very receptive. I appreciated that they listened to me if I told them I needed bloods done!
My consultant very reluctantly agreed to an early delivery despite low & stable quants (0.3). He didn’t think it was necessary, but I insisted based on the likelihood of anti-c misbehaving later in pregnancy. I believe that played a huge part in our success story, and my daughter was born at 38+6 weeks. When her blood was tested, she was Coombs negative despite being c+. This has been documented in the medical literature to happen. My quants weren’t tested past 36 weeks, so I don’t know if my levels rose, but that wasn’t a chance I was willing to take with my baby’s life.
When she was born and Coombs negative, they didn’t even take a full blood count until I insisted on day 2. I explained repeatedly that anti-c could evade a direct Coombs and could they please could they run an indirect to see if she had any antibodies in her system. We knew that she was c+ and that if there were any antibodies in her system they could potentially attach later and cause issues. The hospital didn’t run that test, and I feel very fortunate that she was genuinely unaffected.
I remember a Paediatrician who told me that if she was anaemic they would give her ferritin (iron). It was only because of the research on the Allo Facebook group & Allo Hope foundation that I insisted they should check her ferritin levels before doing that. The doctor still gave me a very inaccurate explanation as to why haemolytic infants need ferritin! When someone is telling you complex science, it’s hard to insist you know better – especially when you’ve just given birth! The lack of knowledge from my providers was scary at times. I wish there was more awareness, or crystal clear guidance for all healthcare providers.
Do you have any advice or encouragement for families dealing with HDFN?
My advice to anyone would be to stick to your guns. If you feel you’re being dismissed or your knowledge belittled, don’t let that put you off. It’s your condition, your body & your baby! There’s a good chance that you know more about your condition and the up to date guidance than your Consultant (or at least that’s how I felt!). It was really stressful going through pregnancy nervously awaiting every blood test. I was reassured by getting myself as clued up as possible based on the research I had done. I felt in control of what should happen, and that really helped.
If you could say something to health care providers everywhere, what would it be?
I’d like to ask health care providers why women need to advocate for their care so much? When all the medical bodies suggest alloimmunized women deliver between 37 and 38 weeks 1, 2 – we shouldn’t have to fight for that. I know alloimmunization is a rare disease, but anti-D is a well understood complication of pregnancy. My Consultant honestly thought I was doing the wrong thing delivering early, and saw no reason for me to do so. He spoke about the risk of long term brain development delivering at 38 weeks and really tried to dissuade me. Had I not been armed with medical literature on the contrary, there is no way he would have agreed.