I don’t even know where to start. I thought that opening up and sharing our baby’s diagnosis with HLHS was hard, but this one… This one I have been dreading with every ounce of my being. We lost our baby.
I was very open with all of the details surrounding the HLHS diagnosis. But because this has been such an extremely difficult time and talking about it is so painful, I hope you will respect that we are choosing to keep some of the details private.
Shortly after the diagnosis of HLHS was confirmed by our pediatric cardiologist, I experienced some additional complications. We lost our baby around 21 weeks of pregnancy.
Although the initial test results (FISH results) from our amnio didn’t show a genetic abnormality, we later found out that the baby had Jacobsen Syndrome.
What is Jacobsen Syndrome?
Jacobsen Syndrome is a very rare genetic abnormality caused by a partial deletion of chromosome 11. It is also known as 11q terminal deletion disorder. Babies with Jacobsen’s experience a multitude of symptoms, including delayed development, cognitive impairment, behavioral issues, distinctive facial features, feeding difficulties, and almost all have Paris-Trousseau syndrome, a bleeding disorder. Heart defects are associated with the disease and were the cause of the baby’s HLHS.
How are you doing?
It’s different on any given day. Some days I find it very difficult to keep it all together. At times I’ve felt completely immobilized by grief and sadness. I’ve been almost completely unable to talk about it with most people outside of my immediate family. But some days I feel a bit lighter, and although I carry the pain with me, I don’t feel as bogged down by it. At times I feel a bit like my “normal” self, but sometimes I feel like I’m just faking it. It’s been very difficult to know how to be and how to move on.
The physical aspect has also been a struggle. Being over halfway through my pregnancy, I had gained around 9-10 pounds. It feels very much like the postpartum period but without a sweet baby to make it all worth it. The thought of wearing maternity clothes is too heartbreaking, and I just feel uncomfortable in my body. Also my milk still came in, which was an incredibly sad reminder that my baby was no longer with me.
Thankfully I have a wonderful support system in my family. After the loss, Layla and I flew out to California. Afterwards, my mother and sister came back home with me to Virginia for some additional family time. I am grateful that I’ve been surrounded by so much love, especially when I feel so incredibly alone with this loss.
How has this affected your faith?
I talked a lot about my faith during my last post. And I would be remiss not to touch on it now. My faith has never been tested as much as it has been over the past several months. I pleaded with God, begged for everything to be okay. And I’ve felt many different emotions. I’ve felt like I was being punished for some wrongdoing or for not being “good” enough. And then I’ve been really effin’ MAD. I’ve found it very difficult to accept that this had to happen to me and my family when we prayed so hard to get pregnant after our last miscarriage and then for this child. I’ve always believed that God is good, but it is hard to see the good in such pain. To say it’s been a struggle would be an understatement.
Since the loss, I’ve been going through the motions with my faith. I’ve read my devotional on and off. I’ve prayed less. I’ve wondered if God has even heard me. But overall, I am desperately trying not to let myself sink into that overwhelmingly negative space. I’m trying to focus on my blessings (because YES, I have many of them) even amidst this incredible sadness. It’s not always easy, but sometimes it helps. I’m hopeful that eventually it will feel less like I’m “going through the motions” and more like a relationship once again.
At this time, I would so appreciate healing prayers for my family and prayers for all other families that might be experiencing similar pain and loss. It’s so lonely and and the pain so deep, but I pray that by sharing this others may be lifted up and feel less alone.
Sharing this news has been incredibly painful. Every time I’ve had to say the words, written or in person, it’s like reliving the loss again. So although I may not respond, please know that I read every comment and am incredibly appreciative of your support.