“It could be nothing, but…” At first I could not even allow myself to think about what the doctor was saying. I mentally jotted down a few key words to research later (when I was alone and could afford have a total breakdown). When I got home I spent hours pouring over every detail of what I could remember from the doctor’s conversation with me. It took some doing since she had not given the condition a name yet (she wanted me to see a specialist to confirm her suspicions first). I finally narrowed down the list of possible birth defects to one single category, called EA/TEF, a birth defect found in 1 out of every 4,000 infants that is typically fatal without surgery. I buried myself in research into the various forms of the defect, the treatments for each form, all possible outcomes, and hundreds of statistics. By the time I got a confirmed diagnosis a couple of weeks later I already knew what the doctor was going to see on the sonograms and what he would tell me. Over the next several months I saw a myriad of doctors, geneticists, and surgeons, having test after test conducted on my rapidly growing belly.
Finally I was told my baby “should” live; that his “chances” were very good. It wasn’t much but it was all I had in the way of hope. Meanwhile, I had run the gambit of emotions, very much like going through the stages of grief I had studied in school: denial, anger, bargaining, depression, and acceptance. Some emotions lasted longer than others. Some came and went and then came again. And even when I did come to terms with our situation, I found that new news (even relatively insignificant news such as having to do more sonograms than I anticipated) would often send me back into the middle of the process. I felt like I kept having to start over again. However, over the course of my pregnancy, I also found there are a few ‘golden rules’ of getting myself back to the “acceptance stage” quickly. I recommend anyone who is dealing with a less than usual pregnancy start practicing these tips as soon as you are told there might be a problem. Remember, your mental and emotion health is vitally tied to your physical health and consequently the health of your baby.
1) Give yourself time to process the news. Learn as much as you can and then let it sink in. By facing all the facts you can right off the bat you won’t constantly be ambushed by “bad news”. Know what the worse case scenario is ahead of time, but also make sure you know the statistics. Be realistic. Know your baby’s chances of having various outcomes.
2) Give yourself permission to cry. Your body needs that release. Trying to be brave can lead to bottling things up. Go in your room, shut the door, and let it all come flooding out. It’s ok to have a complete breakdown if that’s what you feel like doing; in fact, you may find yourself having quite a few throughout the rest of your pregnancy and beyond. The important thing is to let yourself get it out, and then pick yourself back up afterwards and carry on. Don’t constantly wallow in your sorrow, and if you find yourself in a constant state of turmoil get help. It is not good for you or your baby if you slip into a depression. Also, don’t beat yourself up if you find yourself crying in public or when talking to people about your baby. I guarantee no one is going to think less of you; worst-case scenario, they will just chaulk it up to hormones.
3) Talk about it. To your spouse, to your parents, to a friend, to GOD, even to strangers if you need to. Pick up a paper and pen and write things down. Get it out. By repeatedly talking things out you are teaching yourself how to deal with it, even though at first it may not seem like it. For me, I sent out updates on a regular basis to family, friends, and church members via email and Facebook messages. This served several purposes. One, it let me get it all written down and sort through the facts in my head (things about the baby’s condition, the baby’s progress and growth, facts I had learned about his defect and possible complications, what doctors we would be seeing and when, what tests they would run, how I felt physically, NICU policies and what life might be like for us after our baby arrived, etc). There was always so much to process and it helped to be able to get it all in one place and sort through it. Two, it narrowed the number of questions I had to answer face-to-face (thus helping me avoid having to publicly display my fragile emotional state). Three, despite a handful of well-meaning but ultimately annoying comments (an unavoidable part of any hard situation), it allowed me to draw out comfort and encouragement from my family, friends, and church members.
4) Accept the fact that no matter how much people may care about you, in some ways you will end up going through this alone. Your friends may sympathize with you, your family may be dealing with things from their own perspective and in their own way , and strangers may have their own experiences with similar situations, but the fact is you are the only one who is carrying this baby with this problem (and yes every case is different in one way or another). You are the only one serving as a literal, physical lifeline for your child, and consequently your burden will be so much greater than that of anyone else around you. This can be a very hard thing to come to grips with, but expecting anything different can really be setting yourself up for heartache and disappointment.
5) Most importantly, know when to get help. If you find yourself stuck in an emotional state where nothing makes you even temporarily happy, you cannot get your mind off of the situation (you will have periods of time like this but it should not affect your ability to function or prevent you from sleeping for an extended period of time), or if you have any thoughts harming yourself, talk your doctor. Note that dealing with the physical symptoms of pregnancy (especially complications) can cause emotional issues to snowball very quickly, so be aware of how well you are really doing with coping and don’t be afraid to talk to your doctor no matter how small the concern.