Julia’s Anti-E Story

Julia’s Anti-E Story

After 21 months of breastfeeding my first child (born healthy in 2018), I was looking forward to donating my blood. But the answer to my donation was a letter telling me that I have Anti-E antibodies and that those can affect pregnancies. As I am a midwife, I had an idea of what that means and I started to look for research and called experts. My experienced OB has never had such a case but really did his best to support me. But for me, the most helpful was the Allo Hope Foundation’s website.

So, in my second pregnancy in 2021, I knew exactly what I needed to do. We knew my husband has E in his blood group, so I planned MCA dopplers and titer measuring beginning with week 17 and I was shocked by the first results. Before pregnancy, I had titer 1:2.

Week 16 – 1:8
Week 17 – 1:128
Week 18 – 1:256
I was at MCA scan weekly and was sent to a “fetal risk clinic” where we learned, that the laboratory my blood was sent to, used other methods than the lab in the clinic. The titer was rising, but luckily ‘1:256’at my doctor’s meant ‘1:16’ in the clinic.
Those weeks were horrible, and I was so thankful when we passed week 25.

Through the whole pregnancy, the titer was unsteady, but never higher than 1:16 and was 1:8 at birth. MCA scans were made weekly and later in pregnancy biweekly and were always okay.

I was told that I could give birth wherever I wanted, as long as the titer was lower than 1:32 and so our daughter Emma was born at home in September 2021 with 39+6 weeks of pregnancy.
My midwife was prepared and we had an eye on her skin and behavior in the following weeks (as a midwife, I dare myself to perceive signs of rising bilirubin). On day two after delivery, we measured the bilirubin with 8,7 mg/dl and Emma never showed any sign of high bili.

I am so grateful that our daughter is healthy and was not affected by my antibody.
As a midwife, I am thankful for this opportunity to learn so much about a topic that we only touched on in university.
For the reason that I knew about my antibody before pregnancy, I always felt well informed by reading and accompanied by attentive doctors.
But to be honest: When I think of those weeks when the titer was increasing, I have an oppressive feeling in my tummy.
And I learned what most parents learn: You have to be the expert on your and your baby’s special situation- most doctors and medical personnel have no idea about antibodies in pregnancy.

My mother tongue is German- so hopefully my English text is understandable.

Greetings from Austria,
Yours, Julia

How can health care providers help?

Listen to a mother’s gut instinct and take every chance to learn from parents. No one knows everything.

How can scientists help?

I would like to know how an increase of maternal antibodies in the unborn baby effects the titer in the mother’s blood. – Is it really possible, that most available antibodies are in the baby, what makes the mother’s titer seem very low/decreasing, while the baby is affected? And what would then be the treshold value?

What would you tell other parents?

Yes, it is possible, that your baby is not affected at all. Be your own advocate.

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