When Your Baby Has Health Issues

By Anne Frazier Ahrens

Anyone can get Post Partum Depression or Anxiety, but if your baby has health issues, you are at a much higher risk than the average mom. In addition, moms (and dads too!) with prolonged NICU or hospital stays are at high risk for PTSD. According to the Journal of the American Heart Association, PPD occurs in up to 39% of mothers whose children are in the NICU and 10-20% develop PTSD. The stats on parents of babies requiring heart surgery are even higher. Since it’s driven by biochemical changes, you can’t always prevent it, but you can recognize the risk and you can build yourself a support system to help.

Halfway through my first pregnancy, we found out we were having a girl and that she had Down Syndrome. Though we knew we could deal with it, the news was a huge shock and we went through the grieving process that most people do when they find out that reality will be much different than what they’d dreamed. And we knew that there was a very good chance she could have some major health issues. While I was still so excited to meet my first child, all the happy moments were also mixed with a lot of fears and every time someone commented on my pregnancy, there were all these unspoken thoughts in my mind about whether or not she’d be healthy. And I was (incorrectly!) afraid we wouldn’t be welcome in any of the mommy groups or be able to do any of the fun stuff I envisioned doing with a baby and a year of maternity leave.

At our childbirth preparation class, we took the midwife aside after to explain our situation and fears and asked her what we could do to have as “normal” a birth experience as possible despite the fact that our daughter would need to be taken for monitoring or have a NICU stay. She gave us some recommendations to discuss with our doctor, but the best advice she gave was to come to the postnatal baby groups and make sure I got out of the house and spent time with other moms. She told me that my risk for PPD was much higher and I needed to make sure not to isolate myself.

In the end, we were able to take her home with us when I was discharged and she only spent a couple nights in the nursery for observation. She was a beautiful and healthy baby with a gorgeous full head of hair, but also one that would need open heart surgery by the time she turned six months old. It was not an easy first two years, but I was one of the lucky ones not to suffer from PPD.

For moms living in a foreign country and far away from family, the challenges can be even greater. We don’t have a support system and we may struggle with understanding the language or the system, as well as struggling with a child’s diagnosis and everything that come with it. There is help out there, and here are a few things that have helped me:

1. Get out of the house and don’t isolate yourself. Even though it sometimes can be painful seeing all the families who don’t have to deal with the same issues, it is important to be around other people. If your baby’s health permits, be active in baby classes and groups.

2. Find other moms who get it. There are two main ways to communicate with moms who’ve been through or are dealing with the same issues:

a. In person –

i. Local support groups can be a huge help with information and connecting you to other moms you can meet. Even if your German skills are not great, it’s worth contacting the group and asking if there is a mom you can meet who speaks your language.
ii. Your doctor or midwife may be able to connect you to other moms. There are privacy issues involved, so it requires consent of the other mom. The midwife who ran our childbirth class connected me to a friend of hers who had a daughter with Down Syndrome and my wonderful Frauenarzt went to a lot of effort to connect me with another American patient who had a son with Down Syndrome.
iii. Ask your friends. You would be surprised, but there probably is a friend of a friend out there who had a similar experience. When you’re ready, open yourself up to your friends and ask if they know anyone who’s been through it and would talk to you.

b. Online – This is one of the cases where online may be the best option for many. For me, it was so helpful to talk to other moms who were further along in the journey than I was. Sometimes it’s much easier to communicate in writing, or even anonymously if you prefer. I didn’t have to worry about breaking down in public and was able to be open and honest with other moms even though we weren’t publicly ready to share the news. And my German was not good enough to have such discussions in German! Online groups have been a lifesaver for me. And for those dealing with very rare conditions, they may be the only option for meeting other moms.

i. The chat groups at Baby Center (or their UK or Australian sites) have English-language groups for almost every imaginable medical issue or pregnancy complication. Search for a topic, and you’re very likely to find a group that will welcome you or point you to other resources.
ii. Facebook also has an ever-expanding list of groups. Join several and then you can get the feel of them and decide which ones best fit your needs.
iii. And of course the internet is a great source for finding support groups. If there is not one serving your area or language, many will still be very helpful to you if you contact them and explain the situation. Often ones from your or your parents’ hometowns are a good place to start since you have a connection. They may also be able to connect you to another mom to talk with via phone or email.

3. Seek professional help. Be aware of your risk and get help when you need it. In addition to the resources mentioned elsewhere in this issue, your doctor, midwife, or paediatrician may be able to refer you to someone with experience helping moms in a similar situation. If your child has a social worker or psychologist assigned, this person can also help you.

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