Things to Think About
Pregnancy is hard for everyone, however there are some special things you may need to think about when you have iso.
Having More Children
Mourning the Lost
Iso Affects You - Even if You're Not Pregnant
Depression can happen at any time during or after pregnancy. I want to share with you my experience. Pregnancy can be overwhelming on it's own, even a “normal” pregnancy, but when you add in all of the what ifs and things that could possibly happen in an iso pregnancy, it can be downright terrifying. I did ok during pregnancy, but I tried my best not to get attached to my third born (2nd sensitized), just in case something went wrong and we lost her. This was a horrible idea. Every baby, no matter how long they're here for, deserves to be loved. I waited until 36 weeks to set up the nursery. Talk about last minute. I didn't want any reminders around if something did go wrong. Thankfully, we were lucky, and nothing went horribly wrong.
After birth, we had to fight for testing and treatment for our baby. It was hard, let alone trying to recover from the triathlon of giving birth. When we left the hospital, I didn't feel bonded to my baby at all. I knew she was mine, and I knew I'd fight like hell to get her the care she needed, but I didn't feel the “awww” that comes with having a baby. I loved her (because that's what you're supposed to do), but I didn't feel it, or enjoy her. I spent most of my days just not interested in anything. I felt empty inside. Everything was boring, there was both nothing to do, and I felt trapped by a sense of there's so much to do. I would get irritated easily, and just was a bear to be around. I never wanted to hurt myself or others, and I always passed those screenings they give at your postpartum visits, so I lied and told myself (and everyone else), that everything was fine. It wasn't. My insomnia came back, and I'd fluctuate between not falling asleep for hours, and sleeping 12-16 hours a day.
I should have sought help, but didn't. I want to encourage you not to struggle through it like I did, and seek out help.
Another thing to consider, buy yourself a good prenatal vitamin. I found that when I switched from my free/cheap store brand vitamins to a good quality whole foods vitamin, things started getting easier. I had more energy, and I felt better. Turns out the kind I get has got extra goodies in them to help with mood, energy, and nausea. I buy My Kind Organics prenatal vitamins or RAW Garden of Life Prenatals (p.s. they're cheaper off eBay).
There's a wealth of information at: http://www.postpartumprogress.com/the-symptoms-of-postpartum-depression-anxiety-in-plain-mama-english
Another thing to keep an eye out for is anxiety. I know, telling you not to worry about things in a pregnancy this complicated is ridiculous. I'm not saying don't worry, and I'm definitely NOT saying don't advocate for your baby, but don't let it get out of hand. I found myself having anxiety attacks at 6 months pregnant, and ironically enough, it wasn't about the pregnancy! It was about the other “stuff”, anything else in life. I could be relaxing and reading a book when I'd have an anxiety attack out of nowhere. Apparently there is this thing called postpartum anxiety, that can actually happen during pregnancy. If you're struggling, try to get help. Talk with your doctor and see if you can get a referral for help, or find someone to talk to. Pregnancy is no fun if you can't enjoy it. I really wish I'd gotten to enjoy my last pregnancy more.
Post Traumatic Stress Disorder aka PTSD
Post-traumatic stress disorder happens with pregnancy too. It can be devastating. Please check with your provider. Unfortunately, many doctors just think of postpartum depression or baby blues (which is not the same as PPD), and do not consider postpartum post-traumatic stress disorder. This seems more likely to occur if you've had a previous stillbirth, or end up having an emergency in labor.
Signs of PTSD include weepiness, anxiety, and depression (similar to PPD), but PTSD also includes insomnia, irritability and angry outbursts, panic attacks, nightmares about the birth, a desire to avoid the baby or avoid anything relating to the birth, feeling detached from loved ones, and a sense that some other disaster is imminent.52
The best course of action is to avoid PTSD if at all possible. Interview your provider, hospital staff, NICU, and pediatrician. Make sure you're comfortable with them and their care plan. Ask about all of your options, but know that you can't plan what to do in all scenarios. Get the help you need as you recover from birth, or have your partner get you help.
Some additional resources include:
Having More Children
Children are a wonderful blessing. If you want more children, I'd like to encourage you to talk with your partner, and if you're comfortable with it, go for it. Many iso mothers are given a 0% chance of having a live baby. With all of the new technologies out there (plasmapheresis, IVIG, MCAs, IUTs, and more), chances are better than ever if you can find the right doctor for your care.
One of the easiest ways to have a regular pregnancy, is to use a sperm donor. By screening the donor, you can be certain that he is antigen negative to your antibody. This will guarantee you a negative baby and you will not have iso issues with that pregnancy.
Aside from natural conception methods, one option some women choose is In-Vitro Fertilization (IVF) with Preimplantation Genetic Diagnosis (PGD). This allows you to choose to implant only the antigen negative embryos. What you do with the antigen positive embryos is up to you. Some insurances will cover this process because it is cheaper than having to pay for an iso pregnancy and NICU care afterwards.
Having an Iso baby
Having a baby is a great thing. Having an iso baby (or babies), means you should be prepared for a little more work. You'll have more doctors visits, more lab work and blood tests, more specialist appointments, more to keep track of, and more stress. The cost of having an iso baby is higher than a normal pregnancy depending on your insurance. The biggest thing to consider is that an iso baby takes more time, and iso babies can arrive at any time. They're totally worth it though, but consider how more doctors visits will affect your job, spouse, and other children. With a little extra prep work such as freezer meals, on-call babysitters, explaining to your boss, and knowledge of the Family Medical Leave Act (FMLA), it's totally doable.
How an Iso pregnancy will affect your family
You'll want to consider how an iso pregnancy will affect your spouse, children, and possibly extended family members. Consider how multiple doctors appointments will affect your children's school or summer schedules, and try to find a simple way to explain things to them. We just said, “Mommy has to go to the doctor to check on the baby.” It was simple enough for our little ones (2.5, and 1 years old), but older children may want more information. The pregnancy can cause stress for them too, so keep checking in with them to see how they're doing and how they're handling everything.
It can be difficult to find a way to explain things to others, and you may get some negative responses. Discuss it as a couple, and decide ahead of time how you will respond to negativity. This can be especially difficult if you've had a loss, or complications previously.
Mourning The Lost
It's absolutely devastating to lose your baby. Words cannot fully express how you feel. Please seek care for yourself and your family from a qualified professional. The hospital where you give birth will have a social worker who will be able to help with emotional support, and things like planning ceremonies. Try to find a way to remember your baby. Some women choose hand prints, photos, jewelry, or other things that have special meaning. Give yourselves time to grieve and heal.
Please consult additional resources such as:
Iso Affects You (Even If You’re Not Pregnant)! Get a Medical Alert Card
Since it seems to come up a lot, I'm covering the medical alert card and it's importance again.
Our antibodies don't just affect our babies, they affect us too. The same antibodies that destroy baby's blood cells because they've got the antigen, will also destroy donor blood cells. If you get injured, end up unconscious, or have some other emergency situation and need blood, it's important for the doctors to know about your antibodies so they can find compatible blood. Once you have antibodies, you will have them for life. Your body will always remember how to make them quickly if it ever finds incompatible blood. Even if your antibodies are too low to titer or undetectable, the medical personnel need to know about them. If they don't a hemolytic transfusion reaction occurs (more info about that below). About 20 people die in the USA each year because of them. 5 minutes to fill out a free medical alert card, or order a bracelet can literally save your life. Yes, you need one even if you are A-/B-/AB-/O-. In an emergency, priority for blood goes to those with known antibodies, Rh- women, Rh- men, and then everyone else.
Here is a free medical alert card. Fill in the info, print it, fold it in half and put it in your wallet. Make sure the top line, “Emergency Medical Alert”, is visible. Bonus if you can laminate it. Put "Transfusion Alert: Anti-E antibodies" or whatever your antibody is right where it says “Transfusion Alert”.
Additional Information About Transfusion Reactions
"Acute hemolytic transfusion reactions may be either immune-mediated or nonimmune-mediated. Immune-mediated hemolytic transfusion reactions caused by immunoglobulin M (IgM) anti-A, anti-B, or anti-A,B typically result in severe, potentially fatal complement-mediated intravascular hemolysis. Immune-mediated hemolytic reactions caused by IgG, Rh, Kell, Duffy, or other non-ABO antibodies typically result in extravascular sequestration, shortened survival of transfused red cells, and relatively mild clinical reactions. Acute hemolytic transfusion reactions due to immune hemolysis may occur in patients who have no antibodies detectable by routine laboratory procedures" (53)
Easier to understand transfusion reaction info: https://medlineplus.gov/ency/article/001303.htm
Hemolytic Transfusion Reactions In 2011, the number of reported fatal hemolytic transfusion reactions increased from 7 (18%) in 2010 to 9 (30%) of confirmed transfusion related fatalities. There were increases in both ABO hemolytic reactions and non-ABO hemolytic reactions. Despite these recently observed increases, a downward trend in the total number of reported fatalities due to hemolytic transfusion reactions has continued since 2001.
In 2011, there were six reports of non-ABO fatal hemolytic transfusion reactions: Two of the six cases were attributed to errors in the lab:
In one case, an anti-K was correctly identified; however, an error in pulling segments for K typing and compatibility testing resulted in the transfusion of an incompatible, K positive unit.
In a second case, a positive antibody screen misread as negative resulted in transfusion of an incompatible Fya positive unit. The immediate spin compatibility test did not detect the incompatibility. (54)