I have anti-Fya and anti-K antibodies. We didn’t find my antibodies until week 28 following my routine blood work. After they were detected, I had weekly MCA scans. One week, I had 2 scans due to concern intervention was needed, but things settled down. I did not need any intrauterine blood transfusions (IUTs) or other intervention during my pregnancy.

We asked a lot of questions when we were first told about the antibodies. Our fetal medicine doctor openly told us that he hadn’t dealt with my antibodies, let alone the combination of anti-K and anti-Fya. It felt very unnerving. We were getting very few answers right when we asked since our consultant had to confer with another local bigger hospital. We were told all of the things that could happen and each week we asked more questions.

My titres gradually rose for both antibodies and the doctor’s advice was to induce at 37 weeks. I was also being case loaded by a trainee midwife who had never heard about alloimmunization or HDFN. My main midwife hadn’t either – everyone was learning from the booklets I was sent. At one appointment I was told that I’d need to give birth in the major hospital with the NICU. At the next appointment we were told “no this hospital is fine”. We didn’t know what to do and this added to our stress and anxiety. The decision was eventually made that I could give birth in my local hospital as they said that the antibodies I had didn’t usually require any treatment. (Medical literature shows that anti-Fya rarely needs treatment after birth however anti-K often needs treatment.)

I went in for my induction and everything was straight forward. My son was born and tested positive for both antibodies. The paediatrics doctors came to check him and didn’t do the rest of the blood tests straight away, but assured us everything was fine and that my husband could go home.

About an hour later the bloods were done and we found out that my son’s bilirubin levels were over the exchange threshold. The doctors ordered blood for an exchange transfusion and started to make arrangements to transfer baby to the hospital with the NICU. He would have had to go alone since I hadn’t been released yet, and my husband was sent home. Thankfully the doctors wanted to wait 2 hours while they got everything ready for the exchange transfusion, so they had him on intensive lights.

By some miracle the bili levels dropped significantly and we could stay in the NNU (neonatal unit) at our original hospital. We went from initially being told to expect to stay in the hospital for a week minimum, to heading home after 3 days in the incubator. It was a stressful time and full of worry but now we have a healthy 3 month old.

What advice or tips do you have for other families dealing with antibodies and HDFN?

Ask as many questions as you can think of, and try to get an idea of all possible scenarios.

If you could say something to health care providers everywhere, what would it be?

Health care providers, please give parents more scenarios. I was told all of the interventions and all the scary stuff about anti-K and anti-Fya antibodies, but nothing positive. Compared to a lot of sensitized pregnancies, mine and a lot of pregnancies are positive. The whole thing was really stressful and they could have easily reassured us if only more people were aware of the condition.

I also wish the booklets that I received from the Allo Hope Foundation were available at the hospitals to be given out when women are diagnosed. These gave me far more information that my doctor or midwives knew.

If you could ask the scientific community to do or to research something, what would it be?

I wish more was known about these antibodies and that the information was easily available to doctors and patients.