I went to my first fetal cardiology support group meeting at the Sibley Heart Center tonight. I don’t believe I’ve ever participated in any sort of support group whatsoever, so I wasn’t quite sure what to expect, but I was fairly certain it would involve a circle of some sort and maybe 12 steps. Turns out I was right about the first part at least. I started out disappointed when our small circle appeared to be only me, the social worker (Christin), and Dr. Stauffer (the pediatric cardiologist who 1st diagnosed us), but was pleasantly surprised when 2 other families walked in a little late. Turns out they provided better support than any doctor or nurse yet. The first couple (Rachel and Todd) have a baby due December 16th who was just diagnosed with TGA and Taussig-Bing. Needless to say that the wife was still very emotional and my heart went out to her remembering how hard those first few days were when everything came to a stand still and our world came crashing down around us. You struggle to keep your head barely above water figuring out this strange new language, dissecting exactly what the problem is, and what can be done about it; not to mention, nearly cause your head to explode seeking out and crunching various statistics in a way that portrays you as having better odds than you really do. I know she probably doesn’t believe me, but I tried to tell her it does get a little easier once you’ve had time to digest and let things sink in. Touring the hospital and meeting the surgeon helps too, which they told me they are doing soon. I’m sure Rachel wanted to slap me when I advise her to just focus on the positive and try to stay busy, but I don’t blame her.
On the other end of the spectrum, a second couple (Jennifer and Clint) walked in along with their mother to tell us about their 8 week old son Wyatt who doesn’t have a hole defect but rather some kind of issue with heart function... a valve I think, but don’t quote me on that. Here I am feeling sorry for myself and come to find out this poor couple has been in the hospital for 8 weeks, didn’t have any forewarning of their child’s condition prior to birth (in fact, Wyatt was not diagnosed until 3 days after), and they just found out yesterday that the only cure for their son is a heart transplant. They looked like walking zombies. Devoid of all life/emotion. The topic of tonights group was “coping strategies and stress/anxiety reduction.” Now you tell me how you’re supposed to cope with that kind of news after 8 weeks of living hell in the hospital??? I couldn’t think of a damn thing to say to these people without sounding stupid, yet they somehow managed to provide m, Rachel and Todd with all sorts of really great advice. I guess when you can’t help yourself, helping others at least makes you feel productive. I know I felt better trying to help Rachel and Todd, by just sharing my emotions and experiences thus far. I wish I could have been of more/some help to Jennifer and Clint, but nothing short of finding a transplant for their child will bring them any real comfort at this time. I’m hoping that just listening intently somehow provided them some kind of outlet for their agony. Just goes to show you that as bad as you think things might be for you, there's almost always someone out there who's got it worse.
I’ve listed some of Rachel and Todd’s suggestions below in hopes they might help someone else in a similar situation.
- Bring sweaters and comfortable shoes. The hospital is always cold and you are on your feet a lot.
- For continuity, try to communicate with the same doctor/nurse whenever possible.
- Don’t be afraid to ask questions... sometimes over and over again until you get an answer you clearly understand.
- Always trust your intuition. You’ll find you’re right more often than not and besides, you are the one paying the most/closest attention to your baby.
- You are your baby’s best advocate. If you cannot be present always have someone there you trust on your baby’s behalf.
- Be sure to attend and put into practice the infant massage class available at the Sibley Center. With your baby getting poked and prodded with needles constantly, it’s important that your baby doesn’t learn to associate all touch as bad. (I thought this was an especially good piece of advice. The thought of our baby cringing and screaming with every touch just makes me want to burst out in tears.)
- Don’t be afraid to accept and asked for help... if possible have a close friend or family member coordinate those who want to lend a hand to prepare meals and shop for basic groceries/essentials for you. (Someone remind this control freak of this one please.)
- Think of the the step-down unit as a home simulation exercise to get you comfortable with taking care of the baby on your own without actually leaving the safety of the hospital just yet.
