Today, November 17th, is World Prematurity Day. According to the March of Dimes, 15 million babies are born prematurely around the world each year. More babies die from prematurity than from AIDS, malaria or diarrhea. Each year in the United States, 1 in 9 babies–about 450,000–are born prematurely. Prematurity is defined as birth that occurs prior to 37 weeks gestation.
World Prematurity Day is personal for me–I have two preemies. My daughter was born at 26 weeks. We thought that we would lose her on her second day of life. She almost died again 26 years ago today from sepsis but she rallied. There were surgeries, terrible fears, PTSD, and finally, unbelievably, a day when she came home to be our baby after 100 days in the Neonatal Intensive Care Unit (NICU).
Preemies aren’t just small babies and they don’t look like little dolls. As you can see, my daughter looked like a science project. I learned a lifetime’s worth of medical terminology. Bringing my girly into my life changed it in ways I am still learning about. For my infertility clients who want twins, I promise you that you don’t want two desperately sick preemies.
To those who are preemie parents, or those of you who know someone who is, thank goodness for the Internet! For parents of preemies up to age 4, check out Preemie-L, a wonderful listserve of helpful preemie parents. For parents of preemies over the age of 4, check out Preemie Child.
Now I’ll share with you the gift that I was given when my daughter was impossibly small and fragile. Someone showed me a picture of their healthy preemie. The message was “Babies grow. Have hope.” So I share this today with preemies, their parents, their friends, and their loved one. Babies Grow. Have Hope.
I originally wrote this blog post for Pregnancy After Loss Support. I wrote it on October 15, 2015, Pregnancy and Infant Loss Remembrance Day, in honor of my clients, their partners, their families and friends, and always—always—the memory of their babies. The presence of their absence is with us every day, but particularly on October 15.
“She would be five years old now,” said my client wistfully, looking out the window. “When I see a child of the same age, an imaginary movie plays in my head of what she would be doing. What would she be like? Would she be learning to ride a bicycle? Would she have a special blankie? Who would her friends be? Who would I be as her mother?”
After the birth of a baby born still, time stops. For a long time. Devastation results. It’s not just the death of a beloved, deeply wanted child but also the death of a dreamed of future.
And there are the unintended insults from others who forget about or gloss over a baby’s passing. And questions about the next child. Well, it might be a good thing to have another child. Sure.
At some point.
If you are not terrified.
And if you have hope.
And if you are healthy.
And if you and your partner agree.
And if you don’t have fertility problems.
Or you have not had one or more previous pregnancy losses.
But there’s a problem with other’s hurrying you along.
The baby you can’t forget is the baby others can’t remember.
“The English language lacks the words to mourn an absence. For the loss of a parent, grandparent, spouse, child or friend, we have all manner of words and phrases, some helpful some not. Still we are conditioned to say something, even if it is only “I’m sorry for your loss.” But for an absence, for someone who was never there at all, we are wordless to capture that particular emptiness. For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives. Who can describe the feel of a tiny hand that is never held?”
— Laura Bush, Spoken from the Heart
We don’t replace children with new children. They are all beloved, whether they are in front of you or in the front of your “heartmind”.
This is the essence of what Pauline Boss, University of Minnesota Family Social Science professor emeritus and one of my doctoral professors, calls ambiguous loss. The baby is not physically here but psychologically present. We may not be able to reach out and hold the baby but she or he is very much here in mind and heart. Miscarriage and stillbirth are a type of disenfranchised grief. Too often, what people don’t see, they don’t acknowledge or attach to. “Unfortunately, in the United States, the size of the coffin, the size of the grief. If there is no coffin, there’s nothing to grieve,” said Sharon Covington, MSW, LCSW-C at Shady Grove Fertility Center.
It can be tricky to navigate the absence of their presence. Living here in the Midwest, the first question out of a new person’s mouth is “How many children do you have?” Some of my beautiful patients name all of the children, those who are living and those who are living in the heartmind, with the brief version of pregnancy loss and perhaps the long journey to pregnancy. Others shrug and hope that they don’t cry.
You are grieving the child you never knew.
Except you did know a lot about that child, in a way that no one else on this planet has done. You saw that child in your mind and you attached. The presence of their absence. You invested in your dreams for yourself and that child and your family. Loss is both now and future.
But you can heal. The experience of having a stillborn or a miscarried child is real and it stays with you. With time, therapy, prayer, compassion for yourself, and other experiences, including some experiences that I don’t have words for, things can change.
I heard a story from a beautiful bereaved mother who was taking a walk on a still warm fall day. She described a stunning back-lit tree with yellow leaves that was losing its leaves in that very moment. She said it was like a gentle shower of leaves. She heard a voice in her mind that said, “I’m okay and you are going to be okay.” She felt a sense of almost instant peace. She knew in that moment that that was her deceased baby son. She had no doubt about that and I didn’t either. Her son was present for her in a way that is filled with love. She is a bereaved mother. She is a forever mother. And she will be okay. And you will be okay, too.
You have started fertility treatment with great hopes. You hope to conceive on the first attempt of whatever type of treatment you begin. Unfortunately, that is not always the case. Fertility treatment can become an obsession that can challenge your health and emotional well-being. Knowing your limits can help you to feel more in control of your treatment options and schedule. Yes, there are choices to make along the way, even if they feel like forced choices. Here are 8 suggestions for when you choose to continue or to stop infertility treatment.
1) Make some decisions up front—It is important to know what you and your partner can and cannot do about treatment options. Some of this will be determined by finances. It is unwise to pursue treatment to the point of bankrupting yourself and your future. A baby at any cost can be harmful to you in the long run. Negotiate what makes sense to you and your partner. It is common that one partner is willing to pursue many options but the other partner is less comfortable. Sometimes treatment options bring moral or religious concerns. Discuss such concerns with your partner and your clergy, if necessary, to know how far you wish to pursue treatment. There is a caveat to early decision-making: the finish line often moves. For example, inseminations do not work and you find yourself open to using IVF or donors eggs. Start over and renegotiate with your partner.
2) Set a timeline for family building—Trying to have your first child or adding to your family can take years. Know how long you wish to pursue a parenting plan and by which means (i.e., inseminations, IVF, donor eggs or sperm, surrogacy, adoption). I hear often from my clients that they will continue with treatment until their birthday, a chosen date, or an anniversary of their first treatment attempt. Age can be an important issue when pursuing fertility treatment or adoption. I often hear “I don’t want to get my Social Security card when my child graduates from high school.” Know that time is passing in life for all of us. Put some time limits around your efforts.
3) Measure your level of hope—Having some level of hope is huge in making decisions about fertility treatment. You still have gas in the can. You feel resilient. You and your partner have enough energy for another try or for trying something different to build your family. You are both on the same page. If you can muster the finances to keep going—without wrecking your financial life, your sense of yourself, or your relationship—keep going. If hope is waning or out of gas, consider other options or stopping.
4) Accurately assess your chance of success—If your doctor is willing to keep going and there is a reasonable chance of bringing home a baby, keep going. However, if you have done many, many cycles of treatment and hormone levels show poor prognosis, we must take that into account. Hope is good. Denial is not.
5) Are you giving it your best shot—You don’t want to have regrets. In fact, avoiding regret is one of the strongest factors in undergoing treatment. Often people have a strong need to have the chance to try some sort of fertility treatment, even if test results aren’t too good. What’s interesting is what the range of “trying” means. For some, this may mean three cycles of timed intercourse with Clomid. For others, this may mean going from inseminations, to multiple IVF cycles, to donor eggs, or adoption. You have to balance the need to try with the need to be realistic. You have to be real about what can you afford. You have to be real about the effect of “trying” on your mood and your relationship. Is this just a bump in the road or one too many potholes that you can’t recover from? Give it your best shot, whatever you choose to do.
6) Are you feeling worn out by medication and injections—Hormones are difficult for many women. You may have gained weight or feel uncomfortable lumps on your rump from intramuscular injections. Your mood may have gone to new and uncomfortable places while on these medications. It is fine to tell your doctor that you no longer want a particular medication. It is also just fine to say that you don’t want any more medications at all.
7) Have you have lost the reason that you are trying to building a family—You may feel that you have to keep going because you started and the project is not complete. Many people continue treatment for fear of disappointing their families or their partner. With secondary infertility, people will continue beyond a breaking point because of guilt that there will not be a sibling for the living child. Staying with it because of fear of disappointing others, guilt, or shame are not reasons to continue fertility treatment. Losing yourself is a problem in and of itself.
8) If you are feeling traumatized and running out of energy—You are really, really tired. Of EVERYTHING. You feel defeated. Your spirit is deflated. If you cannot stand driving near the fertility clinic, cannot take one more injection, you feel beat up, or that you have lost yourself and the life you used to know, these may be signs that you feel traumatized and are running out of energy to continue with your family building efforts. Consider how many more disappointments you can take. If you have had one or more miscarriages, hope for a good outcome can wane. Determine how much hope you still have. It is a-okay just to say “I’m done.” You may notice a lot of unexpected relief. The idea of never going back to the clinic may have great appeal. Your partner’s got no more gas in the can. This is a time to pack up and find peace over time.
Pay attention and trust your intuition about when to continue and when to stop infertility treatment.
Sometimes the answer comes to you in an unexpected way. A client told me a story about the day that she unexpectedly ended her fertility treatment efforts. She stepped up to the receptionist desk and spoke warmly with the receptionist whom she had known for several years. When the very large chart was placed on the desk, it made a “whummp” sound. That sound was symbolic of years of trying and “That was it,“ said my client. “I was done and I was relieved to know that I was done.”
There are choices to be made. You can make them. Perspective matters. You can be reactionary and say, “Dammit, I want to stop right now!” You can. And then what? If you stop, what does that look and feel like? Grief? Bitterness? Relief? Acceptance? Do what you can to say that you fought the good fight and that you have done everything you could to get what you want and need. Then give yourself time to find closure. Closure takes however long it takes. There is no set amount of time to heal. Finding acceptance and peace is a choice. You will know when you are there. And truly, you will be okay at some point. I promise.
How did you decide to continue or stop infertility treatment?
This is a story about unexpected surprises, resilience, and 6 ways to be a victor, not a victim. Buckle your seatbelts…
I just spent time at the most beautiful beach in the world—the Emerald Coast on the Florida Panhandle. It’s been my happy place for more than 20 years. This year, family members gathered from far and wide and there was laughter—a lot of laughter—goofiness, and great food. Gorgeous water. Hot sun. Fabulous.
Until this happened.
This was not in the plan. At the beach. Huh. #nothappy What to do?
We’ll be resilient, I said. We’ll find the absurdity in distress. We’ll laugh some more. Well, some of us more than others, I have to admit. So we began to experiment with different types of transportation.
Then demented race-scooting at the Walmart.
And then this happened.
“Hey, Sonster. Let’s do this.”
The theme to “Star Wars” came into my mind.
So we explored our fears of this moment. Well my fears, anyway:
Will I freak out on the helicopter?
Will it go down in the Gulf of Mexico, drowning us in beautiful surroundings?
And the big one, will I live through his? (I took out some insurance on this one by putting on my best underwear. For the ER or the coroner. You know, right?)
And then the moment approached. I hope we live…I hope we live…I hope we live. And then we’re flying.
And it was G-R-E-A-T.
So, the bottom line about resilience is, you have to decide whether you will be a victor or a victim. Here are my 6 tips for resilience:
1) Breathe for 20 seconds before you say a word. Do the Breath of Victory. (See my previous blog post Breathe a Quick Reset.) Start by exhaling slowly and deeply, with a slight constriction in your throat. In your ears and brain, you will sound either like Darth Vader or the ocean. Then inhale deeply and slowly. It is inevitable that your thoughts will lighten to some degree.
2) Laugh your butt off. I learned this from my Aunt Claire who once jumped in a lake while wearing an evening gown. I’m not kidding. Dark humor gets us through almost anything. My clients know that even in difficult times, humor gets us through the next five minutes.
3) Keep going. I mean it. You can get stuck in the negativity of the moment. Example, how do you get to the beach on crutches? Well, you crawl. The water awaits you.
4) Lose the shame and embarrassment. Shame and embarrassment are internal and make you feel miserable. It’s like carrying around a bag of boulders. Put them down and walk away. Hold your head up high and act like a king or queen. Others may question you, but you just pageant wave and smile.
5) Be grateful for anything you can find in the moment. Your life. The lives of others you love. The love of God. Sunshine. The ocean. Chocolate. You get the idea.
6) Know that this crummy moment will pass. Do some cognitive shifting. Example, “I’m on crutches but I can wear my awesome new shoe on my good foot.” Take a positive neutral position, like “A month from now, things will be different.” If you feel traumatized, I understand how powerful that can be. Treat it with EMDR, a wonderful thing I do with clients as part of their therapy. It’s like brain bleach. Want to know more? Ask me!
The bottom line is that resilience is within you. You can be a victor or a victim. Find your own victory. I know you can. How have you been resilient in your own life? Where could you be more resilient?
It’s Father’s Day and many men will be celebrated. How about the fathers of a stillborn baby or after a miscarriage? In my office, I tell many a man, “You are still a father after pregnancy loss.” It doesn’t matter that others have not met the baby or didn’t know that you and your partner (or a gestational surrogate) had a miscarriage. You are still a father after a stillbirth or miscarriage. I see you. I know.