Tips for Explaining Antibodies to Family & Friends
One of the things we hear a lot is, "How do I explain antibodies to my friends and family?" Explaining antibodies can seem very hard, especially when you aren't quite sure on them yourself. Sometimes there's the fear that they will ask a question that you don't know the answer to. Sometimes you have to explain a loss when it's already so hard and everyone is hurting. We know that explaining antibodies is a difficult thing, and we'd like to try to help make it a little easier on you, but please don't put pressure on yourself and feel like this is a script you have to use. It's all designed to give you an idea of things people might ask, and to help reduce your anxiety by thinking through what you might say ahead of time. Even if a part doesn't apply to you, keep scrolling. At the end we discuss common things you might hear, and potential answers to them.
A Basic Understanding - For the Quick Conversation
Imagine you bump into a friend or a cousin out and about and they say, "Hey, how are you? How's the pregnancy going?" Chances are they are curious, and interested, but also not really wanting to dive into a 40 minute conversation about the intricacies of red cell antibodies in pregnancy. While you could not mention antibodies at all, you could also give a quick update about your pregnancy and include them. Starting off by keeping it short is often the best way - that leaves the ball in their court for if they want to ask you for more information or if they just want to keep it quick. Consider saying something along the lines of "Great, but I got back some abnormal blood work. The doctor is going to be monitoring baby closely."
If they want more information, but the conversation still needs to be short, you can try things like:
"Our blood doesn't match, so my body made antibodies to try and get rid of the blood that doesn't belong. But the good news is that it's treatable and the doctor is keeping a close eye on things."
"You know that + and - on your blood type, mine and the baby's don't match so my body treats baby like it's a cold virus and attacks it. But it is treatable and the doctor is keeping a close eye on things. "
"Just like how our bodies make antibodies to things that don't belong when we get sick, my body made antibodies to blood that doesn't belong. So the doctor is watching baby closely and can help him."
For Those Who Want to Know More
Once your body made antibodies, you have them for life. Your body stores a memory of them so it can quickly make more antibodies if the foreign blood is ever found again. This is why you need a medical alert card and why your blood has to be matched very closely if you ever need surgery. They can see how many antibodies are in your system with a blood test referred to as titers, or in the UK quants. Expect lots of blood draws.
These antibodies attach to the foreign antigens and destroy the blood cells. Destroying blood cells causes anemia (blood loss). The blood loss is a bad thing. But we can monitor it with a special ultrasound called an MCA scan. It checks how fast baby's blood is flowing - if it's going too fast, baby is anemic. If baby is anemic, they will do a transfusion on baby either while he's still in the womb, or after delivery.
As you get further along, you make more blood and antibodies, and baby makes more blood which the antibodies see. This is why it's common for titers to go up after 28 weeks. To prevent baby from being anemic, you might be induced or asked to deliver early. This is very common, so expect to have the baby earlier than 40 weeks.
Things You Might Hear
"Isn't there a shot for that? (referring to Rhogam)"
This is a very common question. Most people don't know that Rhogam is designed to prevent not treat a disease (like any vaccine), and that it's only for one specific antibody. Consider saying something like, "Unfortunately, the shot is designed to prevent what I've already got, so it won't do any good." or "No, the shot is just for D, I have a different letter/kind."
"Is it fatal?"
It never fails, but someone will ask this one. The truth is, left untreated this disease can be fatal. The short answer is, "Yes, it is, that's why I have so many appointments to check on baby. Almost all babies survive now with proper monitoring and care." A longer answer would be be, "It can be, but my antibody (anti-P etc), usually isn't, but they're still watching baby closely to be sure we get to take our little boy home." or "It can be. My antibody (anti-D, anti-Kell, etc) can be aggressive, so they are watching baby very closely. All of our numbers have been good so far and we are very hopeful."
"Don't you just want to cry all the time thinking about your baby?"
You will get questions about your emotional state and how you feel. Remember the people are coming from a place of love and are genuinely concerned about you. It's ok to tell them how you're feeling, that you're worried/scared/anxious. Sharing your feelings is important, and it's also important to get help if you need it. I suffered from postpartum anxiety during pregnancy. Just like PPD, it can happen during pregnancy and is common during a high risk pregnancy. Talking with someone can help and a trusted friend can encourage you. Don't hesitate to talk to your doctor and seek help if you need it.
"So you're done having kids right?"
This one is very hard and it's totally up to you how you answer. On the one hand, it's a nosy intrusive question that no one but your spouse has any business asking. On the other, you know (hopefully), that they are just coming from a place of love and are genuinely curious. If you say yes, that's fine. If you say no, that's fine too.
"That's between my husband and I."
"Yes, this was a difficult time for our family."
"No. Many women with antibodies go on to have later successful pregnancies. Some are on their 3rd, 4th, or even 7th baby with antibodies."
"Sort of. We're considering other options like adoption or IVF".
"We're not ready to make that decision yet."
"Shouldn't you have an abortion?"
This question is a shocker the first time you hear it. As shocking as it sounds, responding rashly or in a rude way generally doesn't help the situation. Having antibodies does not mean you should have an abortion. Consider responses like:
"I haven't thought about it."
"No, we want this child."
"Children born to moms with antibodies are just like any normal healthy child after a few months."
"There's very little risk to moms. I don't feel like I'm in jeopardy."
"Will your child have learning disabilities or be physically disabled?"
No, not usually! There are cases where the children have developed conditions like BIND or Cerebral Palsy, BUT THESE ARE COMPLICATIONS FROM MANAGEMENT AFTER BIRTH! In many cases where there's brain damage or injury it is because the bilirubin got too high after birth. There are standards and procedures designed specifically to prevent brain damage from high bilirubin, and they work. Just having antibodies does not mean that your baby will have issues.
The shortest, simplest answer is, "Nope."
"Will your child ever be normal?"
Yes! You have every right to expect that your baby will be a normal child. Once antibodies clear the system, iso babies are just like other children. The blood cell destruction stops when the antibodies die off. After that point, your child never has to worry about antibodies again and is a normal baby.
You can try humor: "Well...How normal can you be with so and so in the family tree?"
Or the straight up, "Absolutely. As soon as these antibodies die off in a few weeks, he'll be just like any other baby."
"How can I help?"
This is the question we all love to hear. If you're involved in raising awareness about antibodies, share it. If not, no problem, just share how you need help.
"I could really use someone to go with me to the next appointment."
"Watching little Johnny so I could go alone would be great. Can you babysit?"
"I'm so exhausted after all the appointments, dinner that day would be lovely."