Before I start this, I wanted to set some ground rules. This is not a “please help me fix this” post. I welcome ALL support comments and love. This post is very raw and very personal. We are in the process of taking all the information from my care team and making the most prayerful decision possible. Please know, we are looking at ALL options. I am also not a medical professional; the information below is my understanding from all the information I have received and researched. If you have additional information, please send it to me in a private email email@example.com or direct message. Please feel free to share !
This is for all the ladies out there that need to know you are not alone. I want to share for the people that are afraid of judgement and need someone who understands. I do!
If you are like me you have probably dreamt of having a family of your own since you were a little girl. You have secretly built a list of baby names for that special day and continually edit it when a name strikes you. Do not try to deny it, we ALL do it; haha! You start dating, fall in love, get married and naturally that list starts getting longer. You begin really listening for names you love. Then start crossing off the names you decide you dislike or your siblings/in-laws use them for their children. Definitely crossing it off!
So you can see the list is ever evolving and ever changing. It is a wonderful time in your life and a fun game to play with your spouse.
When I was diagnosed last year, my care team told me that if we wanted to have children then we should go ahead and try; then I could start treatment next year. We had a little bit of time. The decision shortly got reversed when I had several bad episodes and waiting was no longer an option. I was further along than what we had initially thought. I needed to start treatment sooner than we expected. My heart sank.
Last fall, Marshall and I sat with my doctors and made a very hard decision to start the treatment we were dreading.. We knew by doing so, the side affects and risks would ultimately make some life decisions for us. This was something we did not take lightly. There were tears and more tears…
The treatment is not a medication that you can become pregnant on. This treatment, if it works, is also something I could potentially have to be on the rest of my life. I am pretty sure you have put two and two together by now. So my question was, “can I come off the medication, try to have a family, then go back on it ? ” The look in their eyes said it all.
Even if I come off the medication, delivery alone could put me on a ventilator during and after delivery for a while. I would potentially need several rounds of IVIg (during pregnancy and after delivery) and the baby could have transient MG for up to 6 months. Therefore the baby would have to be delivered in NICU and monitored very closely; receiving swallowing and breathing assistance. Before baby would even arrive, all ladies have a chance of developing signs of preeclampsia (early signs are fairly common and normally easily treated before it becomes dangerous). The medication used for preeclampsia, I can’t take due the affects it has on my illness. This would force early delivery at the time of discovery; regardless where you are in the pregnancy.
Do not get me wrong, all or none of these things could happen. There have been some MG’ers that have great pregnancy stories. Then there are several that have stories with some or all the risks above.
So at what point or what would a doctor have to tell me, that would give me peace about coming off the treatment to try? Honestly, I do not know the answer to that.
Gestational carriers and surrogates have been brought up in conversation as well as adoption. But to be honest, the feelings are too raw to even begin to have those conversations. Also MG is a progressive disease, so I will have a better understanding of my progression once I come back from DUKE (hopefully). So this discussion is on hold for now.
Where do we go from here? I am not sure. All I know is I can barely look at the list of names without tear-filled eyes. I see baby outfits for Easter and I have to sit in the car and cry it out with my husband because I know that may never happen for us. Every time someone asks me about children I feel my stomach turn into knots and grab for my husband’s hand and let him take lead to answer, because I just can’t right now.
Today is an emotional day. Today I want to cry and scream from a rooftop. But I know I will have better days. I know I will have ups and downs. For all the ladies out there, regardless of the reason that finds yourself in the same boat, know I love you and I understand.
The feelings I have mentioned in this post only barely scratch the surface of what I am feeling. It is a very complex situation/emotion that has different effects and triggers from all directions of your life.
I would like to do a follow up post on this to answer any questions or add to any thoughts I have as I go through this journey. I know it will not be easy, I know it will be hard.
What I do know? I am loved. I am loved by a loving and gracious God. I am loved by an amazing and strong husband. I am loved by my family, friends and co-workers. And I am loved by THREE amazing fur babies that remind me every day that they chose me to be their mommy. (If you have animals you know what I mean)
Blessings and love,