Serial Loss

Miscarriages: 

If I were to get pregnant again, I would be considered extremely high risk.  As I've closed in on forty, pregnancy in the first place has gotten harder and harder.  The fact that I am approaching forty is another risk factor.  And the fact that I have had 14 miscarriages, 13 of them in a row, several of them medically proven, makes me just about highest of all but not quite.  The farthest along I was for any of those was 12 weeks.  Most were six weeks and before.  Some of those, I would take the test and within a few days, I'd start to see blood.  One of those, I had to have a D&C.  That was rough.  Another, I took drugs to pass the baby to avoid another D&C.  I wouldn't recommend that at all.  I lost so much blood, I was seeing black spots and nearly passed out.  Even after several hamburgers and an iron pill, by the time I was rushed to the ER, I was only on the low end of normal.

These miscarriages really had an impact on me.  The worst were those where I made it as far as looking at an ultrasound, only to hear those dreaded words, "There is no heartbeat."  The first time, the one before Alamanda came, about killed me.  I'd never heard such horrible words in my life.  I've since learned there are more painful words like, "The baby isn't breathing" and "We couldn't revive her."  I've heard other more painful words since then as well.  But the sight of ultrasounds has become painful since I haven't seen a single live one for me in over six years.  Some of those miscarriages launched me into some of the deepest, darkest bouts of depression of my life.  I have the deepest empathy for those who have miscarried once.  It's not a pain I would wish on anyone.  

I went through all of the recommended tests for serial loss short of genetic testing with nothing to show for it but medical bills.  No answers and no rainbow baby.  I have stopped trying.  I have prayed about it and felt it's okay to stop trying.  I can cherish the two live children I have and be thankful for them.  I can also look forward to the resurrection to hold all of them, including those I never 

Kell Antibody:   

I said this serial miscarrying makes me almost as high risk as is possible.  There was something I discovered during the pregnancy with Alamanda that I had never heard of before.  My husband is homozygous for something called Kell antigen.  During my second pregnancy, I became sensitized to it and had a Kell antibody waiting for Alamanda as she grew inside of me.  

When I started researching Kell, I couldn't find much in the way of useful information, only support boards full of traumas and horror stories or doctors' words that didn't make sense to me.  I did see a study that followed six women with Kell who got pregnant with six babies, and all six babies died before the advent of high-tech modern ultrasounds.  For those who haven't heard of it--and there were many when I dealt with it, including nurses--it's a lot like RH factor where the mom's immune system sees the baby as the enemy, as a disease.  The mom's body attacks the baby, leaving the baby anemic.  If the situation is not caught, the baby could end up dead.  And the truly scary thing about this is that one day, the baby could be fine.  Two days later, the baby could die of anemia.  

There are preventative shots to be taken for RH.  No such luck for Kell.  All that can be done, or all that could have been done six years ago, was careful monitoring via elaborate ultrasounds, several per visit, to make sure the blood flows freely through the baby's brain.  The good news is Kell does not impact the baby until after about the sixteenth or seventeenth week.  Now, this is information that I was told three years ago when I was looking at it as a possible cause for my serial miscarriages.  I was told it could not be the cause because the losses were too early.  

Another bit of good news about this is that only 8% of the human population has Kell, and of those, all but 2% are heterozygous, meaning every pregnancy has only a 50% chance of being affected by the Kell antibody.  Here was the nasty part for us: we won the genetic lottery.  We were of the 2% who were homozygous.  We should have had all sorts of problems with anemic babies after the first.  My second child should have been affected by Kell since I should have been sensitized with the first pregnancy, but she wasn't.  Kell wasn't even in our sites until baby three.  The bad news is the only two options for a baby made anemic by Kell are both dangerous: transfusion or induction.  Induction isn't so bad if the baby is fairly far along but very high risk for an early baby.  

                                                 (Painting: "Security" by David Bowman)

Hope: 

And here's the hope for mommies and daddies struggling with Kell: it didn't affect Alamanda's pregnancy at all.  I was there at the specialist's office every week and a half from week 18.  Each visit, we expected problems.  I worried nonstop about stillbirth.  But Alamanda was protected.  Even the specialist turned to me, mystified, and asked how is this baby not affected?  I can only say she was preserved.  She was induced to spare her more danger, tiny but perfect at 37 weeks.  We lost her four months later in an accident.  But those four months were a true blessing, and I'm thankful for them.  

Like I said, this information may be dated.  It is not intended to replace a doctor's advice or words.  I just thought I'd throw this out there into cyberspace for those who struggle with serial miscarriages and Kell.  You are not alone and there is hope.  The most important hope and protection for those struggling with the Kell antibody, other than a doctor's help, is faith.  I pray for those facing issues of either Kell or serial miscarriage.  But one has to understand faith and prayer in God don't always work like we'd like them to work.  I've been praying to have a live baby for years and have finally had to find peace and gratitude for the family I have.  Sometimes, we have to submit to the Lord's plan for us.  It's called "but if not" faith.  I would love to have a baby, but if not, I will still believe and obey.  And it can be hard.  Feel free to contact me if you'd like a listening ear.  

A Hug from Heaven

My little girl has always been a toucher.  We called her the Squish [until she told us the nickname dies or else] because she wanted to hold, touch, squish food, people, pets, EVERYTHING, and she wanted to be held and tickled and snuggled.  She's a tactile learner, and her love language is touch.

She also always had a bond with Alamanda, her baby sister.  The day before we found out we were pregnant, my two-and-a half-year-old girl came in to tell me her baby sister was coming.  When we so much as suggested we may get a boy, she looked at us as if we had grown a third eye.  When her baby sister was taken from us, we did not explain how it happened, but she gave us details she couldn't have known from anyone but Alamanda.  They have a bond.

My girl still struggles with the loss of her sister, even after counseling, even after all this time.  Alamanda knew she did.  So when my little girl requested and prayed for a kitten for her 8th birthday, Alamanda sent her an entire batch of kittens to raise from a week old.  But my angel knew that the one we selected would not be the perfect match for my girl.  So six months later, she sent another batch with just the perfect kitten, the one that would remain tiny, the one who would be docile, who would let herself be hauled around and loved and snuggled to bed.  And Heavenly Father wanted us to know this gift was a miracle because each ounce up to a pound was hard fought until we united our voices in prayer with others.  Then that tiny kitten practically doubled her weight overnight.

Alamanda could not be here to give her sister all the hugs she craved, so she sent a hug from heaven, a constant, everyday hug.  And it only occurred to me now that this is the case.  So every time my girl hugs her fuzzy baby, she can know she's hugging her angel, too.  It just goes to show that guardian angels really do watch over us, and our loving Heavenly Father cares about even the little things if they're important to us.

Gratitude is the best Medicine

We had a baptism and family activities surrounding it over the weekend.  It was beautiful and meaningful, truly the answer to over a decade of prayers.  However, anytime I'm rubbing shoulders with pregnant women as there are in my family or playing with babies, or even watching children my angel's age play, those who are six right now, there is an echo of pain.  I try not to give it space.  I try to focus on the good that is happening, to enjoy the moment.  I got baby giggles over the weekend, which fills the hole left by 13 miscarriages and no hope of a rainbow baby.  At least for now.  

But when I'm tempted to fall into that pit, I come back to gratitude, the key to happiness.  At one point, I could focus only one what I did not have.  I would dwell on the frustration of a body that refuses to make any more live babies.  I would dwell on the ultrasounds when they would point out the dark silence and say those dreaded words, "There is no heartbeat." Or my arms would ache for a warm bundle that is not there anymore and will not be there until the Lord comes again.  

But then I have to remember I am grateful that I do have warm bodies to fill the spaces: my husband, my kids, my pets when the others aren't here.  I remember my pain calls me on an important mission to help others with theirs through my writing.  I remember that my angel is never far away, busy but ready and willing to be there when I need her, not visible but still present.  I remember my physical blessings, my talents, my joys, my faith in Heavenly Father and His Son.  Often when I am down, I hear a story of someone else's hardships, which reminds me that there are worse places to be.  But also that my pain calls on me to be empathetic to others who are also in pain.  The Lord has given me so much that I can usually remember and be grateful for that part rather than exist in the pain of what I don't have.  

Empathy (or what not to say)

Learning from Mistakes:

I remember with some pain remarks I made to someone who had miscarried several babies.  I had not entered the angel mommies’ club.  I didn’t know what it was to experience real loss.  I said things like, “So when are you going to have a baby?”  I knew this couple had issues with keeping babies, but it seemed like I had been able to have babies without trouble.  What was wrong with them?  I was insensitive when I needed to be kind and understanding. I have since run into the same kind of hurtful behaviors when I was most in pain. When one has lost a baby, it’s hard for others to know what to say.  It’s easier to say or do the wrong thing than the right thing.  So let’s go over a list of the things not to do.  This list is by no means exhaustive.  I've based it on things I wanted (or didn't want) when I suffered my losses as well as a few things I've heard from others over the years.    

NOT to do list:

1.  Avoid.  Some avoid the mourner because they don’t  want to be reminded it could happen to them.  Reminders of mortality can be hard.  But it's harder on the mourner to be treated as a contagion.  

2. Assume.  Never assume you know how the mourner is feeling.  Even if you've lost a child, every mourner has a different experience.  The phrase, "I understand" is rarely a good choice because sometimes, even a husband doesn't truly understand what his wife is feeling and vice versa nor even may a sister know what her sister is feeling.  There are often commonalities, but everyone's specific experience is unique.  Even a hug without permission is an assumption.  It's usually best to let the mourner lead.  Offer a hug, and they often will accept.  Just don't assume.  

2b. False comparisons.  This is more a follow-up to not assuming.  Although those who have never lost a child assume it's comforting to say, "I know how you feel because my cat died once," it's often best not to make a comparison between one's own experience and someone else's.  We can still draw on the feelings of loss we've felt through the loss of a house or a cat or whatever is precious to us to empathize without verbalizing that comparison. Pets can be precious to us, but I have lost pets of many kinds.  There is no real comparison between the pain of pet or possession loss and the pain of child loss.

3. Tell them how to feel.  A lot of people think it's reassuring to tell a mourner, "You should feel better because your baby is with God" or "You should feel better because this is part of a bigger plan" or "You should feel better because you'll see the baby again."  Although all of this may be true and may be understood by the mourner, it does not help or ease the pain of the mourner to be told how to think and feel.  Even leaving off the "You should feel better," this is implied by the rest of the statement.  Sure, I know I'll hold my baby again, but when I'm suffering so badly I can hardly hold my guts inside, so badly I feel like I'm going to explode, to be told I shouldn't be suffering makes the pain worse.  It makes me feel like I'm doing the wrong thing in feeling pain.  And we all must understand grieving is a natural part of the process.  Even though the one attempting to comfort isn't really thinking about it, they're often saying these things to make themselves feel better.  It hurts to see someone in pain, so they are essentially trying to shut the mourner up, control them to stop their own discomfort.  This is not true of everyone trying to use these phrases to comfort, but that's how they may be perceived.  

4. Imply a child can be replaced.  First off, usually anything following, "Well, at least" is a really bad idea.  "Well, at least you can have another child" is one of the worst.  It implies a new child simply replaces the one they lost.  Although for many, a new child can take the edge off the pain in some ways, there is no replacing a child.  "Well, at least you have other children," is almost as bad.  It implies to the mourner that this child doesn't mean anything, that their loss doesn't count because they already have children.  Any "Well, at least" phrases are likely to make a person feel less rather than more comforted.  

5. Try to force your expectations on them.  Expecting someone to get over it devalues the person's loss and implies judgement, that another person should have control over the mourner's grieving process.    

6. Add more responsibility than can be handled by a recent mourner.  A lot of non-mourners think showing up without much warning would be comforting.  The day of my first miscarriage, my sister wanted to drive all the way up from her home to mine.  In her mind, this should have been comforting to me.  In my mind, I just wanted to be alone with my kids and my husband.  I didn't want to be expected to smile and perform for others when all I wanted to do was cry.  Sometimes, such a visit is comforting to the mourner.  Once again, don't assume.  As an added note, a lot of people seeking to comfort brought me live plants for my baby's funeral.  Some people may find this comforting.  I found it painful to watch the plants die but didn't have enough energy to take care of them.  Sometimes, it's all the mourner can do to continue to breathe.  Don't add to their burden.  

To Do List:

1.  Offer.  Offer to be there, to watch kids, to hug, to donate money, to make food, whatever.  Offer so that the mourner knows you care and are willing to help in whatever way you can.  This can help relieve the person's stress, but don't assume it necessarily reduces the pain.    

2.  Respect the mourner's lead.  As mentioned before, it's usually best to let the mourner dictate the pace.  If they want live flowers, a visit from family, a hug, etc, they can let the comforter know.   If the person declines, respect that without trying to insert your own emotions on the subject.  You may be disappointed they don't want your help, but let it slide.  They're suffering.  Don't expect them to react like you want them to react.  

3. Pray for them.  I could feel the prayers even during the worst of my pain.  It felt like a warm, protective bubble.  If you tell them you're praying for them, they know you love them.  

4.  Support them in whatever way they need to mourn.  If they need to cry, let them cry.  If they need to talk, let them talk.  If they need silence or privacy, give them what they need rather than what you think they should need.  

5.  Love them, no matter what.  It's a good idea to let them know this, but don't use it to control them.  Unconditional love is the key.  Sometimes, a person in their deepest pain is not very lovable.  Love them, anyway.  

    Conclusion:

Mourning is a hard thing for those suffering as well as for those watching them suffer.  We want to help them feel better.  And feeling better will happen with time.  It's critically important that we be the helper rather than the unintentional inflicter of wounds.  Don't hide.  Don't make things harder.  Just be there.  Love.  Healing comes with time.  If we're there for the mourner in times of need, they may one day be there for us.  

Happy Birthday, My Angel

Today, Alamanda would be six years old.  It should have been a day of celebration with a big princess party thrown between my two daughters' birthdays.  Instead, I'm an emotional wreck.  As usual on days like this.  Most days, I survive by launching through my day, moving forward but not thinking.  I have multiple pictures on my bedroom wall of her beautiful face, including the ones on my happy wall of pictures of my babies at age one month and a big one right over where I sleep with her dates, too close together.  But they blend in with the scenery.  Even the drawing I made of my angel--older but still beautiful, based on a feminization of my boy who looked just like her at that age--blends in.  I can live in emotional stability most days.

But then the dates come along, those monumental dates when she came to me and when she left me.  And I don't turn away.  I look right into the face of my joy and my pain.  We pull out her baby album.  We buy her an angel food cake.  We make her presents and write notes, which she can see and appreciate from the other side.  She still gets a party.  It's just not the one I expected when I still thought the world was a safe place.

My husband will be taking off the afternoon, so we can go to the LDS temple as the best birthday present of all for her.  When we do, we can feel the Holy Spirit strongly and can feel her with us.  It doesn't hurt so much when we are buffered in the arms of His love.  These traditions are beautiful and make me happy.

But it still feels like my joy is suspended over a precipice, that when the smiles end and the vibrant pictures of Alli's sunny face run out, and we are left to glance through the waxen images of the face where my baby no longer resides, the darkness comes again.  I fall into the abyss of these days.  Some birthdays and anniversaries are easier than others.  I've already lost count of my tears so far today, and it's only 9 am.  I know grieving is a healthy process.  I know it's important to feel and remember and celebrate.  I will survive this day.  I will invite the Spirit and my Alli to join us.  I will remember that Jesus Christ overcame death, and I will hold Alli again when she is resurrected.  I will remember families can be together forever.  It's the only way to make it through.

[Painting entitled "Security" by David Bowman.]