When a Son Comes First, Losses May Follow (science may suggest)

Whenever I feel like it’s been too much and I’m about to give up- I learn something else that keeps me in the game just a little longer.  I feel like I’ve had some pretty significant discoveries in our research this week in what may be the cause of our losses, but I’ll get to that in a minute.  

I have to say looking back at the couple posts immediately following our last loss, I was in a pretty dark place.  It was one of the worst losses I feel I’ve experienced emotionally.  I’m happy to report that I am doing much better now.  The pain doesn’t go away, but you don’t want to live in darkness and sorrow for the rest of your life.  You have to pick yourself up and keep going. 

I was blessed to meet a friend online who really helped me put it in perspective as to why I was having such a rough recovery after my fifth loss.  She talked to me about compounded grief.  When you suffer multiple losses, each loss you have adds to the burden.  So you are not only mourning the most recent loss, but the four babies who came before it.  The loss brings everything back up.  I feel like in dealing with compound loss I also suffer a greater loss of hope each time and experience more despair.  It feels like “reality” takes over and “hope” for what we dream of takes a backseat.  But knowing that it was ok to mourn for all five at once helped me accept my pain and deal with it.

I’ve had people tell me that I need to learn not to “stress so much” during a pregnancy since it can contribute to a loss.  Well let me just tell you how easy that is.  I really do try, with all my heart.  I pray, I meditate, I visualize positive things, I rest, I do happy things.  But the worry is so deep I don’t think it’s something you can totally let go of.  Statistically, your baby is not going to make it.  I’ve often compared it to an imaginary situation where Jack is in critical condition in the ICU or something.  If my little boy was on life support, and we didn’t know if he was going to make it or not, would people tell me not to stress and to calm down?  Though the situation is not the same, to a mother’s heart, that is how the situation feels, of being pregnant and unsure if the baby will live.  Every moment is critical.  You try to be positive, but the reality is bad things happen and you have to brace yourself for it. 

  
I talked to my mom quite often during those first hard months.  I felt like I couldn’t feel sad because I still have so many good things in my life.  But I think you have to still let yourself feel sad, or it will come out anytime, like in church in the form of a panic attack.  I had migraines and heartburn and restless nights.  I felt guilt all the time for skipping things and letting the house go.  I felt sick often and just couldn’t get out of bed.  I would take medicine and find all of my strength just so I could go to work.  I finally felt like I had it together enough to go back to church, and then remembered I had to work at 630am that week.  I felt like people were going to judge me for not recovering fast enough.

But I was recovering, and learning.  And now, some of those thoughts seem silly to me.  It’s ok that hard things are hard, and take time.  My mom would tell me “Please put music on in your house, that always makes you so happy.”  And she was right.  I tried to find lots of little things that would bring me joy and bring me out of the darkness.  I started to give myself little motivational speeches.  “It's ok if you can't have more kids right now. It doesn't suck less, it’s not necessarily about timing or patience.  You just  need to be ok accepting that you can’t have more kids right now, with no strings attached or stipulations for the future. Just be ok for now."

There was a young woman on our floor of the hospital who was a few years younger than me, pregnant with her first baby.  She presented at the ER with some other health issues, but in the process of getting treatment, they discovered that her baby had stopped growing some time before.  My heart stopped as they brought her to a room close to my desk.  I’ve been that girl.  I felt like I needed to go rescue her.  I heard people around me justifying things to try and make the situation less horrible.  “At least she wasn’t 20 weeks yet, at least she’s young, at least…. Etc etc.”                                                                                                           

All I could think is “Grief isn't acquainted with logic.”Grief doesn't care about logic at all.

I got to a point where I felt ready to take care of myself again.  I finally started on the prescription Deplin, a prescription strength high dose l-methylfolate that my body has likely been depleted of my whole life due to the MTHFR.  What a difference friends.  This is a breakthrough for me.  Even though it’s expensive, I feel like when I take it every day I am a different person.  I have more energy, more motivation, fewer headaches, fewer digestive problems, less pain and fatigue.  I feel happier, I don’t cry so much.  It has been amazing to see the difference in my own health, and I do wonder if it would help me maintain a pregnancy.

I still have hard moments where people who were pregnant the same time as me continue to grow and I can’t help but wonder why their pregnancies continue and it’s like mine didn’t even count.  But I’ve learned it’s ok to struggle even when you have lots of great blessings.  Even though there are worse things in the world (many many horrible and worse things) it doesn’t discredit the pain I feel. 

I felt ready to jump back into figuring out what was going on with my health.  I started with going in for some of my back problems.  Thankfully I do not have ankylosing spondylitis, for sure this time.  One of the diseases that run in the family that I somehow dodged.  I do have some spinal fusion and they are thinking it’s more of a musculoskeletal issue or chronic inflammation.  They know that lots of my back muscles are having some problems, muscles spasms and what not.  They drew some labs and I have a follow up this week to see about some treatment.  I am excited- I really want relief.  I’m 24 and I feel like I’m 40 when I move.  I want to start being proactive before I actually get older. 

We made our way back to the fertility clinic for a saline sonogram.  I was nervous about the procedure, but more nervous about the result.  I didn’t know what I wanted to see.  If something was wrong, we could probably treat it.  If everything was healthy, where do we go from here?  $430 later, I had the results of the procedure.  Normal, healthy uterus.  It was more discouraging than I anticipated. 

totally normal and healthy, and to me looked very empty.

My nurse was also disappointed.  It was the last “easy fix” is how she explained it.  Next comes eqq quality tests, DNA fragmentation in the sperm tests, chromosome karyotyping for both of us, etc etc.  But basically, none of those things are an easy, cheap, or guaranteed fix.  They're all super expensive and not very well understood. Or it could still be my blood or MTHFR and we might get lucky with a healthy baby, or not.

 I felt like, if I'm supposed to carry and deliver another child, God's just going to have to do it. I couldn’t see any other answers. They said recurrent loss is one of the hardest things to figure out. It was a hard apt but I called my mom and cried for a while and then tried to focus on all the other areas in my life where I have goals and dreams, and all the other great things we have going for us right now. But I've learned you have to let yourself have a bad day, be sad, slack off, and take that time so that it doesn't last for weeks and weeks. I just felt like I got the diagnosis "you might not be able have more children and we don't know why" even though that's not exactly what they said.

The longer I have lived with this daily pain, the more I learn that "trusting Heavenly Father" isn't so much patiently waiting on him to provide the miracle you desperately hope for, but to trust Him to guide your life so that you can develop into your soul's potential and learn and be things that you never would have expected. It is a hard thing to accept that what you want may never come, and having the faith “not to be healed.”  We have to learn to be happy in our circumstances and find joy in everything we have been blessed with, and find joy and love instead of bitterness towards others.

And in spite of all of it, I do believe miracles happen along the way. Sometimes it's after you've accepted the way you think life is going to go. Sometimes they aren't the miracles you pray for, but how sweet is it to feel God's love after such an emotional journey? And you remember all over again that trusting him is so real, and all that matters in the end when all will be made right. When I got that picture of my uterus I chased away any negative thoughts. I used to have so many self-loathing thoughts because I lost babies, but now I try to think "thank you for being so healthy, and thank you for giving me Jack."  Hating myself won't help anything. Loving my body and being thankful for it leads to more peace, and to taking care of my physical and spiritual needs. I'm more motivated to exercise when I want to love my body, take care of my heart health, and not get diabetes. That is one thing I know I don't want.

I struggle with feeling left out of the mommy club these days.  Most of the kids Jack’s age have younger siblings, and people ask more often why we don’t have more kids.  Or they just always talk about pregnancy and babies.  All the time.  After a while it becomes unbearable.  I feel like I make people uncomfortable who know my history because they  don’t know how to speak to me about their pregnancies or babies or what to invite me too.  And I don’t know either.

One of these days when I was feeling lonely, I told my mom how only one percent of women will lose three or more babies in a row.  She said, “Amber, that is one in a hundred women, that's a lot in the world. You're not alone.”  I thought about that and realized out was true, so I joined a secondary infertility support group on Facebook. I am really happy I did, I'm not out of place in an infertility group where no one has any children, and people understand some of the strange navigation of coming to the realization that you're not having more children even though you've had one.  They understand some of the loneliness in the mom club, etc.

Breakthrough #1 this week:  they say I have no "causation" for my losses yet, but I swear every mom that's had 3 or more losses in a row in this group has MTHFR.  That has to mean something, even if we don't understand all the science behind it. That kind of makes me wonder we should even spend the thousands on DNA testing if this is like the actual problem. Then again, once we know about DNA we know forever, and we're young so it will last a long time. Folate is essential to the attachment phase of a pregnancy....I've never been on a strength as high as with Deplin before, so I hope that will make a difference. And blood thinners are critical, I wonder if I should do injections before trying to conceive and after, and see if a few more weeks on a strong thinner makes a difference. Maybe it's still the luck of the draw with this disease, like how all I did with Jack was prenatals and aspirin. I just pray so hard for direction. Get an IUD and be done for a few years? Try again? Tests? What kind? How can we afford this, should we do everything we can now or save for later? Is adoption going to be in the cards later? I don’t need to know everything now, just a start. I wrote a letter to my nurse saying that MTHFR seems to be a factor in many many women struggling with this same issue and we are also talking about switching my Deplin to a higher dose.  I think we need to talk about naming MTHFR as the cause, and fighting against it more aggressively instead of the DNA testing….maybe.

So it always seems when I’m out of answers, new things come up.  My nurse recommended I visit a website of a doctor in New York who specializes in these difficult cases.  I decided to just skim the website, but I wasn’t expecting anything new or different.  Until I started reading his list of reasons that they would consult on a case.  My heart just about stopped.

Birth of a son followed by multiple losses??! What does that have to do with anything?  How have I not heard of this being a situation?  I’ve always wondered if my firstborn child somehow affected something, because he came so easily.  Well I started doing some research, and according to one study that I found, 74% of SRM (secondary recurrent miscarriage) was preceded by the birth of a son.  These women had a son, and then all had four or more losses in a row. According to this study, fetal cells can end up in the mother's circulation and pieces of male DNA are found in the mother (for up to like 27 years).  That process causes an immune reaction that makes it hard to carry future pregnancies, especially male fetuses.  My mind is blown.  I know I have lots of other factors, but this is brand new and makes a lot of sense.  I asked the secondary infertility support group and found other women with one son and multiple losses after.  One woman has actually seen this doctor in New York.  Maybe after Kevin finishes school we will find our way to New York to see this doctor.  Who knows.  Maybe we will do an online consult (although I’m terrified what it must cost).

I’m just glad that my options are not out yet.  I don’t know what we want to do now.  I’ll have my egg quality tested this month, and then I may consider getting on some more long term birth control so we can take our time and plan the next step.  School and work are busy and we are moving into a beautiful townhome in 6 weeks.  I feel like I may be more successful getting my extra weight off now that I'm on the Deplin and my thyroid is being managed.  I really want to lose some weight and feel more healthy.  My mind is becoming more career oriented as I accept that I may not have a large family.  Sometimes I think about going back to school and having a career once Kevin is working as a DPT.  Only time will tell.   

I just want to end this post with a powerful piece of writing that my baby sister sent to me.  She wrote it for her drama class.  She has such a strong literary voice for 16 years old!  I hope that in time she will learn to feel happy with her body despite any problems, as I am learning to do.  She phrases things perhaps a little differently than I would, but certainly captures that dark places of helplessness we can feel when health problems become overwhelming.  Love you Maddi. 

 "Betrayal of a Body" By Madison Forsgren

De•pres•sion: 1. Feelings of severe despondency and dejection. This is how the dictionary describes what I have. This doesn't even touch the surface. I am clinically depressed. There is a chemical imbalance in my brain. I'm supposed to take a pill to make me feel okay, not happy, just okay. Are pills really the answer? What if I become addicted to them? What if I become numb to what is happening around me? I'm not ready to just take a pill to just be okay. Struggling with depression is hard, to put it simply. It messes with every part of me. It makes me hate myself for the dumb joke I told that nobody laughed at. For the shred of confidence I had before I remembered I'm nothing special. It's unhealthy, the thoughts I have are unhealthy. The habits I have are unhealthy. Everyday is hard... looking for answers as to why? Why me? Why this? And then finding the chilling answer. Getting the text from my sister. I lost the baby. 1.2.3.4.5. This is my sisters 5th miscarriage. I told God. I told him I'd be really good and stop doing everything I did that was wrong if he let my sister have this baby. I promised I'd be good. I messed up. I know it sounds crazy because I wasn't carrying the child. What if my actions made god mad enough that he punished my sister and her family. Mthfr: rate limiting enzyme in the methyl cycle and is coded with the mthfr gene. Symptoms of mthfr include chronic fatigue, irritability, brain fof, anxiety, sleep issues, aches and pains. Those with mthfr cannot break down b vitamins, the vitamin that supplies energy. Mthfr is linked to depression. Mthfr can lead to miscarriages. This is the genetic disorder my sister has. My aunt, who had two stillborn children, has this disorder. This is what I will be getting tested for in a week. This could be my answer. My dooming answer. No one yet knows how to cure or help those with mthfr. I can take active b vitamins to get me up and through the day. What can I do to prevent a future miscarriage?  What if I never get to be a mother? Or what if I lose 1.2.3.4.5. Little lives because my body cannot carry them? My step sisters, who have no gentic similarities as me and my sister and my aunt, have had 3 children with as healthy baby on its way. This taunts my sister. There's nothing to do. My body cannot just be fixed. The depression gets heavier with guilt, heartbreak, loneliness, and confusion. What if in a week, my mthfr test is negative? Why am I depressed?  Why do I hate myself?  Should I even get the test? I feel so betrayed by my own body. What's worse than that? De•pres•sion: 1. Feelings of severe despondency and dejection

One Last Goodbye

I paid off the pregnancy today.  It made me feel relieved, and also sad. The bill was a surprise to us because of some insurance complications. Originally I thought it was going to be excruciating to continue to pay prenatal bills for a child who was never born, because every month I would have to revisit that fact in a very concrete manner. However, in time I found it to be healing. It was a way for me to still feel like their parent. After all, here I was, responsible to pay the medical bills incurred during their short life. I'm still their mother and I still needed to take care of those things. It was a reminder that I did everything I could to keep them alive. The payments recognized that they existed, and left an impression, even if it was small.

Now that the bills are paid off we can move forward with more diagnostic testing in our attempt to understand why these little lives end so quickly, so often. I'm thankful for those months of payments because it forced me to take time to grieve instead of distracting myself immediately with more tests. They existed, it mattered, I did everything I could to keep them alive, I nurtured them to the best of my ability according to the situation we were in, and I took care of the financial responsibilities their life left behind. It may have taken place over a few short weeks but it sounds like a parental relationship to me. My responsibilities for that little life may be finished for now, but my heart will treasure each moment we had. The tears in my eyes just thinking such a thing attest to that.

Babies dont just grow in mommies' bellies, but in their hearts, and that's what matters in the end. Mommies and daddies love all their little ones, no matter how small they are, no matter how long they are around. God giveth and God taketh away. All we can do is make the most of each moment He gives.

I've felt the love of a mother six times, and am blessed to continue to feel it each day with one of those special babies who made it here to share my life with.

And so one last goodbye to you, my little one, and everything I hoped and dreamed you would be. I wished so badly to meet you, hold you, raise you. But at least I got to love you. God had other plans and I'm learning to trust Him. I may have more children, but they will never be the same as you were. That matters. You matter.

All my love. Mom.