Wednesday, July 22, 2009

What to Say When Someone Loses a Baby

Even if you have been spared the heartbreak of losing your baby, you know people who have lost theirs or will suffer such a loss in the future, and it's good to know what to say when it happens. People said some REALLY stupid things to me when I lost my babies. So, in the interest of helping you avoid being that really stupid person next time someone suffers a loss, here's my list of the Top Ten Really Stupid Things People Say When You've Lost Your Baby:

10) Don't tell me the story of how you (or someone you know) once had a miscarriage at 4 weeks along and how disappointing it was even though you didn't even know you were pregnant and in fact weren't even "trying" and immediately after that you got pregnant (with TWINS!) and everything was perfect and wonderful. I hate that story.

9) "It wasn't time." I've heard this one a lot. It's like saying there's some pre-destined date (set by God presumably) like ... June 2014. And if I even dare try to have a baby before then it will always end in disaster - because it wasn't time. God does not micromanage our lives in this way. This one is particularly annoying when you say it to someone whose biological clock is winding down fast due to age or health problems. Please ... think before you say something so stupid.

8) "God doesn't give us more than we can handle." Look around - LOTS of people have more than they can handle. If you're not one of them right now, be thankful and refrain from spouting useless platitudes.

I'm also not fond of "What doesn't kill you makes you stronger". Sometimes what doesn't kill you just makes you wish you were dead.

7) "Things happen for a reason" This one I find a little less annoying because it's true - things DO happen for a reason. In my view, the reasons or causes of tragedy (cancer, car accidents, whatever it may be) should be studied with the objective of finding the root cause so we can try to prevent them or minimize their damage. Of course, that's not what the well-meaning people who say this are driving at, but let's at least give them credit for not being flat-out wrong.

6) "At least you have other kids"   Any comment that is prefaced by the words "at least" or "just" is one that minimizes the situation.  To me, this particular comment is one of the worst. It implies that I'm not grateful for the children I have. Believe me, I am. I have never had the luxury of taking fertility or my children's lives for granted. Just because I have living children doesn't mean I don't miss my children who died. In fact, having living children means I know exactly what I'm missing out on.

5) "You have an angel waiting for you in heaven" I don't believe anyone can say this with certainty. I know I can't. 

4) "He/She's is in a better place" Lots of people like to say this, but it's really more appropriate for situations where the deceased was very elderly and/or in severe and prolonged pain without hope of recovery. And even in these situations I'm not sure if the bereaved family would appreciate this sentiment. I know people mean well when they say it, but is my family really such a horrible place for my baby to be? Yes, this world is an awful place - and that is why we need little children to brighten it up! Stop and think about how you would feel if your child or children were in "a better place".

3) "You're young, you can have another" This one is very upsetting to me. First of all, babies are individuals and cannot simply be replaced. Secondly, no one, no matter what their age or health status can be assured of having another one. And the very distressing fact is that women who lose babies are the ones most likely to lose MORE babies. You almost certainly don't know the whole story about the cause of the loss, the woman's age, fertility, or health. You should never say this to anyone.

2) "Just adopt" There's no "just" about adoption. It's a long, expensive, invasive process and there are many things to consider before "just" going down this road. More on this later...

1) "You're not going to try again, are you?" *sigh* Kind of makes me miss Stupid Comment #3. Don't think there's any hope for me? Keep it to yourself. I have all the discouragement and despair I need already.
Hope may not be warranted at this point that we have that cleared up, let's focus in on What to Do When Your Friend Loses a Baby:

1) Assume nothing. Listen and find out what the situation really is from your friend's perspective. Is she disappointed? Depressed? Devastated? Traumatized? Your perception is not necessarily reality. Find out what the loss means to your friend and act accordingly.

2) You can't go wrong in saying "I'm sorry for your loss".

3) Send a card or even flowers, and remember this is a loss for both parents.

4) If you say you're going to do something (call, visit, etc.) make sure to do it promptly.

5) Watch your language - For later losses where the gender is known, use "he" or "she" rather than calling the baby "it". If the baby was given a name try to remember it and use that.

6) Resist judging your friend's reaction to the loss and comparing it against what you imagine yours would be. You may think that after two weeks, or two months, or two years your friend should be "over it". You may think that their grief is out of proportion because the baby was so small. If so, you may be in danger of saying Something Really Stupid. Better go back and review above.

7) If you know the person well, consider finding a thoughtful gift so the parents can have something tangible in memory of their baby. Some ideas: a nice frame for footprints or pictures, a plant, a blanket, a parent/child figurine, a memory book, a necklace or bracelet, something you made yourself, or plant a tree in memory of the baby.

8) Please, please, please be a friend instead of just avoiding the person! Don't know what to say? Then say "I'm sorry, I don't know what to say."

9) Just listen. I know my story is not fun to hear, but it helps a lot if someone takes the time to really listen and care instead of just shutting me down with a comment that minimizes my pain or suggests there are easy answers.

10) Reach out to your friend at especially hard times such as the baby's due date, holidays, or the anniversary of the death. Call or send a card/email.

Friday, July 17, 2009

Miles' Story

Today seems the most appropriate day to post Miles' story, because it was two years ago today that I was in the hospital again, having labor induced again, because we'd just found out our baby boy had died.

Jeremiah had been stillborn on January 5, 2007. This was followed by lots of tests and weeks of waiting for the results. While we waited for results, both of Q's parents and my dad were all diagnosed with cancer.  So far, 2007 was the worst year ever.  Surely things would get better, right? My doctors assured us our chances for a successful next pregnancy were as good as anyone's, so despite our inevitable fear, we decided to try again. Once again, to our shock and great joy, we found out I was pregnant on the first try! Even better, we found out on Easter Sunday and the due date was a few weeks before Christmas! It seemed like such a beautiful blessing.

This pregnancy was not considered high-risk because our recent loss was supposedly random, even though I had pointed out to my doctor that all three of my pregnancies were complicated by cord/placenta issues and that didn't seem random to me. The perinatologist said to take baby aspirin, and I did so from the day I found out I was pregnant. Despite past problems, I was hopeful we'd come home with a live baby this time, even if we did have some complications. I'd never heard of anyone losing multiple babies to cord problems, and my doctors assured me they'd never seen it happen twice.

The first trimester was uneventful. I first heard his heartbeat on May 16, which was Jeremiah's due date. Bittersweet. Naturally, I was nervous about the possibility of another loss, but the first trimester passed without excessive anxiety partly because I knew that if I lost the baby at this early stage it would be less traumatic, at least in a physical sense.

Q and I had decided early on in this pregnancy not to tell family and friends about our good news, though we made a few exceptions for close friends who are geographically distant. The reason for this was to prevent the news from reaching our kids through comments like "You're going to have a new baby at your house!" or "You're going to be a big sister!". We didn't want to get the kids all excited about a new baby again until after we passed the midway point when we were to have an ultrasound at the perinatology clinic.

By 16 weeks, the stress was starting to build. The doctors at the OB clinic said I could come in anytime for a quick check if I got nervous between the regularly scheduled appointments. I did so at 16 weeks and baby's heart seemed to be beating normally. On Thursday, July 12, I started to get very worried and called the clinic the next day to see if I could come for a quick check, even though I had an appointment scheduled for the following Monday. They said they were too busy and I should just keep the Monday appointment. By Sunday, I was frantic and it didn't help when my two-year-old daughter kept saying very matter-or-factly and without a trace of fear, "There's a ghost over there, there's a ghost over there" as she pointed to the corner of my bedroom.

Q came along for my Monday appointment.  I was nervous, but hopeful that I was just being paranoid because of our last loss. Being nervous at this point would be perfectly normal, after all. When it came time to listen to the heartbeat with the Doppler, there was dead silence. As the doctor went to get an ultrasound machine, devastation set in. Why can't I keep my babies alive? How can I go on? Indeed it has been hard to go on since that day, but I try to live for my kids on those many days when I can't live for myself.

Unlike last time, things moved along at breathtaking speed. In less than 24 hours I went from hopeful but nervous, to going home from the hospital with empty arms again.

On our way to the hospital to have labor induced, we dropped the kids off at the home of some friends while my brother drove eight hours to come stay with us and help for several days. This time I was at a different hospital because the one I'd gone to last time was too full to take me right away, and I wanted it over with. In retrospect it may have been better to wait. The experience at the hospital this time was horrifying. Last time the nurses and doctor had been very empathetic because most of them had also lost babies. This time it was strictly business. The computer system was down, so I had to go over which tests I'd had done last time and which ones we should do this time. I couldn't believe I could function enough to do this after being dealt such a blow.

Next, labor was induced with Cytotec. This time it was shorter and far less painful, so I was not expecting what happened. I went to the bathroom alone at 3 a.m. and my water broke. It was dark brown with old blood and then Miles just fell out. He was in much worse condition than Jeremiah had been. The trauma of it did something horrible to my brain - I could actually feel it happening. I must have managed some sort of sound to summon Q, because he came and helped me while a nurse was called in.  After the nurse finally came, I made it back to the bed and started to throw up because I was so disturbed by what just happened.

As we looked closer at him it was clear that he was perfect before death had come to claim him. The cause of death was obvious this time - the cord was constricted to almost nothing near his belly and had a few other narrowed portions as well.

Since he was not as far along as Jeremiah he was a little smaller and weighed dramatically less, perhaps partly because he'd lost so much blood into the amniotic fluid. I suppose he died much more quickly than Jeremiah and I'm glad of that.

Early that morning, I was discharged from the hospital. This time we went home even more empty-handed ... no memory box, no mementos, nothing save a badly-done footprint on a piece of plain white paper. We had taken a few photos ourselves, but they are too difficult to look at.

We had hoped to bury Miles just as we had with Jeremiah. We called my mom to see if she could check with the cemetery about doing so. She was sewing foam clothes with her friends in preparation for the apocalypse.  In an annoyed tone she told us, "I hadn't planned on doing this today". How very rude of us to want to bury our child - we weren't planning on this today, either.

We found out from the cemetery that we could not put another preemie casket in the same grave. To have them together in one grave we had two choices: 1) buy a plot, exhume Jeremiah, and bury both babies in the new plot, or 2) cremate Miles and bury the urn in the grave with Jeremiah and my sister later on. We weighed the options and decided to go with the latter, even though we both didn't like the idea of cremation.

Cremation was just much more practical for many reasons. It was much cheaper. We definitely some financial strain going on, since we'd had to pay for two hospital bills and two mortuary bills in six months' time. Also there were logistical difficulties associated with getting the body and ourselves to another state within the time allowed by law.

Miles was born 9 days short of 20 weeks gestation, the point at which the baby is considered a person and the loss is termed a "stillbirth".  Paradoxically, he was not legally recognized as a human, but was considered "human remains". Therefore, we were subject to laws requiring disposition of the body within a certain time period. So we chose cremation and then buried the urn privately the next time we were in my home state. Certainly there was no peace or closure this time once the burial was done, but it is good to know our babies are buried together, as we wanted.

This time all the tests came back negative, including the repeat test for anti-cardiolipin antibodies and for rarer clotting disorders I wasn't tested for last time. The pathology report on the placenta didn't show any blood clots. Nevertheless, when we met with a perinatoligist a few weeks after the loss, she recommended that I use Lovenox daily if I got pregnant again. I would gladly try it if I ever get that opportunity, even though I can find no evidence that this would improve the odds at all.

The aftermath of this loss was pure hell. After the first loss, we'd gotten pregnant again quickly and that certainly helped. This time we'd lost not only the baby we'd so desperately wanted, but also all hope of ever having the family we'd wanted. Q was expected back to work sooner this time, and I was on my own with the kids sooner. In the month following the loss, Q was often out of town or out of contact because of his job. The first day I was on my own I had a panic attack. My whole world had changed permanently, but in a way that was completely intangible to everyone else.

Of course, the maternity clothes had to be packed away again - a tremendously depressing undertaking. But I was glad we didn't have to explain to the kids - again - that our baby had died. We had intended to tell them about the baby in one more week, after the 20 week ultrasound.

I am, of course, even more thankful for my living children, but it's been brutally hard to care for them as I want to. I am not the mother I want to be. I now have depression due to past events and anxiety due to a very uncertain future. Depression is at least familiar, but anxiety is new to me. The heart palpitations, which had gone away during this pregnancy, came back when it tragically ended. Also now I have what's called globus sensation (or globus pharyngeus) which feels like something is stuck in my throat - it's very annoying and caused by extreme stress. And there's also chest pain, shortness of breath, excessive sweating (lose weight without diet or exercise - ask me how!), nightmares, poor memory, and sleep problems. On top of that there's pelvic pain and a few panic attacks thrown in for good measure. I don't like people seeing me in such a state, of course, so it's also been extremely isolating. And yes, I have tried both counseling and drugs, but found neither to be helpful and in fact the drugs seemed to make things worse.

A baby would have been such a happy ending to a very hard year. 2007 brought us two dead sons and three cases of cancer in the family. It also absolutely ruined Christmas for me because Jeremiah died at Christmastime and Miles was due at Christmastime.

Two long years since Miles was born still, I miss him every day and wish desperately for an end to this whole ordeal.

Tuesday, July 7, 2009

Jeremiah's Story

The day I found out I was pregnant with Jeremiah we were on family vacation in Yellowstone. Q and I were thrilled, especially since we'd gotten pregnant on our first try (again!) despite all my pain and problems. A few days later we stopped at the cemetery in my hometown to visit my sister's grave - the same grave where Jeremiah would be buried just a few months later.

I'd been nervous about getting pregnant again, mostly because I'd had some painful birth-related injuries (trust me, you don't want to know) with both of my prior births. They took 6 and 15 months to heal, respectively, but are definitely totally unrelated to the losses we later experienced. So naturally I was worried for myself but also very concerned about how small David had been at full term, how brutal and long labor was (30+ hours each), how doctors had commented on the placentas and cords, and other complications. I went to the OB/GYN just weeks before I got pregnant with Jeremiah to get a checkup and ask if she could see any reason to be concerned about another pregnancy with my history. She said everything seems fine and there was no reason to expect any recurring problems.

With Jeremiah, I had morning sickness in the first trimester, as expected, and was measuring right where I should be all along. I remember feeling so hopeful when I hit the 20-week mark - maybe all my fears were unfounded after all!

Then just before Christmas (maybe it was Christmas Eve - wish I could remember the exact date) I was wrapping presents in my bedroom after the kids were asleep, when I suddenly got a strong impression that there was a man standing about 6 feet in front of me and that he'd come to take the baby. I tried to dismiss this as ridiculous and paranoid. Sure, I'd had some trouble with both of my previous pregnancies but not until the third trimester, and things seemed to be going perfectly this time. I went to lie down for a minute and thought I felt the baby move, so I dismissed my impression as silly worrying. Only later did I realize that the movement I felt that night and in the following days was Jeremiah's body moving around in the amniotic sac in response to my movements.

By New Year's Day I was getting worried, though I kept it to myself.  When I was 20 weeks pregnant with David he was kicking hard enough that Q could feel it, but nothing like that with this one. I had an appointment the next day which I hoped would end the worrying.

My two small kids came with me to the appointment and played in an adjoining room while the midwives checked me. I measured 21 cm - just right. But then they tried to find a heartbeat with the Doppler and couldn't. They tried another Doppler and then another. Nothing. They said to call the OB/GYN clinic and get in for an ultrasound. I gathered up my kids and went to the car, stunned. I called Q at work and told him they couldn't find a heartbeat. He left work immediately and somehow I managed to drive home.

Next we went to the clinic at the hospital and they couldn't find a heartbeat with the Doppler either, but told us we would have to get a detailed ultrasound to confirm if the baby had died. Since it was the day after New Year's everything was booked and we were told we'd just have to wait until the following day for that. What a long miserable night that was, knowing our baby was almost certainly dead inside me.

The next morning a friend watched our kids while we went for an ultrasound. That's when we found out our baby was a boy - with no heartbeat. There were no obvious problems or deformities seen. We cried all the way home.

In the afternoon we met with a doctor and discussed our options - either wait and see if labor would start on its own or go the hospital to be induced. The choice seemed obvious - go to the hospital. I was horrified about what was about to happen, but also anxious to get it over with.

At the hospital we had to walk to our room in the maternity ward, past all the beautiful, healthy, live babies being wheeled down the hall to their mothers. Devastating!

Once in my room it was a long wait before the nurses came to give me the first dose of Cytotec, a very unpleasant procedure indeed, and this was repeated every four hours. Cytotec, by the way, is an ulcer drug commonly used for labor induction but not approved for this purpose. After awhile the cramping started and became progressively more powerful over the next several hours. I had decided to forego an epidural or any other drugs because I'd gone "natural" for 30+ hours of labor for each of my previous full-term births, and was sure this would be quicker and less physically painful.

As midnight approached the pain was as intense as it had been for my full-term births. Since time had lost all meaning, I don't know how long it went on like this - maybe an hour, or even just a half-hour? When the pain eased up for a few minutes I got up to use the bathroom and felt what I thought was his head coming out. After quickly going back to the bed, he was delivered breech by the nurses. I was glad they were in the room at that time because I had been afraid of being alone when it happened, as babies so small can come without any warning. He came out with the amniotic sac intact, so the nurses broke it open, took him out, cut the cord, and put him on a folded up blanket. The nurse asked, "Do you want to see your baby?". I had her describe what he looked like so I could be prepared in case there was something very wrong. She responded that he looked perfect, but had some swelling of his head and neck, which commonly happens after an intrauterine death.

We held him for a long time - our perfect baby in miniature. He was 8 1/2 inches long and barely under one pound (15+ ounces). We were amazed at his tiny fingernails, his perfect feet, his face that looked so like David's when he was born. If he'd been badly deformed, I could at least be happy for his sake that he could find peace in death rather than living a life of extraordinary pain and difficulty. But there was no sign that he was anything other than perfectly healthy, which made the situation feel all the more tragic. I hoped that with all the testing to be done we could get some kind of medical explanation for our loss.

The name Calvin had been chosen long ago if the baby was a boy, but since the unthinkable had happened we decided to name him something we'd never thought of. At my sister's suggestion, we named him Jeremiah, from the Bible verse Jeremiah 1:5 "Before I formed thee in the belly I knew thee." We felt this name was more appropriate for the situation, and especially since Jeremiah was born on January 5 (1:5).

As we were holding Jeremiah, the doctor became concerned because the placenta had not delivered and there was still quite a bit of bleeding. According to her, the odds of this happening for a mid-trimester loss are about 1 in 5. The placenta did deliver soon after, but was incomplete. Q held Jeremiah and nervously rocked him back and forth just as if he were alive, while nurses on either side of me held my arms down. Then the doctor reached in me with her whole hand and tried to pick out the retained bits of placenta. It was so painful that even now, 2 1/2 years later, the memory of it turns my stomach. After a few tries like this with little success, the nurse put in an IV and gave me Pitocin and Fentanyl for pain before the doctor tried again, this time with ring forceps. The fentanyl did little for the pain, but the remaining pieces of placenta were successfully removed and I was relieved to avoid a D & C.

After this ordeal the nurses took Jeremiah away to take photos and footprints. Then they brought him back for our last goodbye. We were alone for a few hours. Q dozed off.  I cried, eyes closed, and felt my sister come in and give me a hug before leaving without a word. 

We made arrangements for a local mortuary to take his body to the airport for transport to my home state, where we would bury him at the foot of my infant sister's grave.

Later that morning we left the hospital. I'd thought it was hard leaving the hospital with empty arms when David was born, because he was in the NICU for 5 days but I was discharged after only one day. This time we left the hospital with only a memory box. It is nice to have something tangible to remember our baby - a little teddy bear the nurses had photographed him with, his tiny perfect footprints in ink and in plaster, and a few other small mementos.

Once home, our greatest joy was to see and hold David and Tania again. It was so sad to tell them their baby brother had died. Tania was not quite two years old, and didn't really understand. David, however, had been very excited about the new baby we were going to have.

Over the next week, I took down the crib and packed away the maternity clothes. Q tried to work from home and also made some brief appearances at the office. I lost 10 pounds in 3 days - why bother eating when the baby I was trying to nourish was dead? We arranged everything for the burial out of state and then tried to figure out how to get our family there -driving that far in January was out of the question and flying was too expensive. My best friend and her pilot husband made it possible. We were able to get inexpensive standby tickets and had to wait at the airport for only a few hours before we were able to get on a flight.

The mortuary in my hometown provided a tiny casket for Jeremiah at no cost and we were able to transport and bury him without spending a large sum of money. My parents (especially my mom) had been opposed to our burying him because of the cost and inconvenience, and would have preferred that we had the hospital 'dispose' of him. While it certainly is costly to pay for a birth and a burial at the same time, we felt this is the right thing to do for our son. Thankfully, my parents did not object to our burying him with their daughter, my sister - and I'm certain she doesn't mind sharing her grave.

Our time at the cemetery was brief because of the bitter cold. We had a lot of family come to support us, as well as my friend and her family. We were very grateful we were able to bury our son. It felt like closure. We had no idea our nightmare was just beginning.

After returning home, we tried to establish a new "normal". Q went back to work and I tried to make life as normal as possible for the kids. Every moment of every day I missed Jeremiah horribly and felt terribly alone. He'd been growing and moving, and now there was only an emptiness that nothing else could ever fill.

A few weeks later all the test results were in. All were negative except for a moderate positive result on anticardiolipin antibody IgG, which we're told is not significant unless there is also a positive result for IgM; after six weeks this was retested and the level was "inconclusive". I got copies of my file from my doctor and noticed on the pathology report that Jeremiah's cord was "hypercoiled". No one had mentioned this to me. I called my doctor . Wasn't it suspicious and strange that all three of my babies had something odd about their umbilical cords and/or placentas? I was told the answer is no - this loss was just a fluke, just bad luck. I could go ahead and try for another pregnancy as soon as I wanted. He discussed it with the perinatologist and she said I should take baby aspirin in my next pregnancy, just in case. Three odd umbilical cords in a row and all I get is "take an aspirin and call me in the morning."? This did not feel right.

By this time I had started having chest pain and heart palpitations pretty consistently for 2-3 days each week. My doctor said to get it checked out just in case, so I was referred to cardiology at have an EKG, echocardiogram, and be hooked up to a Holter monitor for 24 hours to try to pick up the irregular heartbeat. But, of course, a monitored heart never skips. I'm told everything looks OK - it's probably just stress. Now I'm a little less stressed about the stress-induced problem, but it's still disturbing on days when it's happening 5-6 times a minute.

With all the test results in and no clear answers, we decided to try again. We were worried but felt the odds were on our side. We'd never heard of anyone suffering multiple losses like the one we'd just had. Our doctors said they'd never seen it. We figured it would probably take several months to get pregnant so we might as well start trying. We never imagined that in six month's time we would have another dead baby in our arms.