“How many children do you have?”
A seemingly harmless question often asked to women when making small talk. This simple question has the power to bring me, and I am sure many other mothers to tears. This question can be answered simply without any thought by most women. For those of us who have been touched by miscarriage or infant loss, this question is hard to answer. I have been affected by both miscarriage and infant loss. This question often leads to follow up questions and awkward conversation/embarrassment when trying to recover the conversation when answered truthfully. I have a few answers to this question and it sometimes depends on my audience or my emotional state when I choose to answer. My simple answer: “I have three.” My not so simple answer: “I have two at home, one bonus son (my husband’s son) and several in heaven.” Most people don’t think twice when asking this question because they have not personally experienced a loss of this magnitude and don’t understand the emotional stress that can accompany it. I am cautious when asking this question to others now after experiencing our losses. I often ask instead, “Do you have a family?” I let others divulge as little or as much as they feel comfortable.
My experiences and recovery after miscarriage and infant loss:
My name is Lisa. I am 33 years old and I have had a lot of loss in my short life. I have learned a lot about myself, my husband, grief, love, loss and recovery in the last six years. We have been pregnant six times. Three miscarriages and three live births.
Our First Loss
My husband and I married in 2015 after five years of a semi long distance relationship while I was in Physical Therapy School. My husband has a son from a previous marriage, who was nine when we married. We both wanted to have children right away after we married and were thrilled when we found out we were pregnant a few months after getting married that June. We went through the initial excitement. We were fortunate enough to have an ultrasound (US) at eight weeks and were able hear a strong heartbeat.
*Side note about me: I am an over-thinker/analyzer about everything. Having a medical background does not help this.*
During the following weeks, I began to worry and have anxiety. My mother had three miscarriages and so far my three older sisters had healthy pregnancies. I knew the statistic of 1 in 4 pregnancies could likely end in miscarriage. I hoped and prayed that I wouldn’t be 1 in 4. I remember calling my mom asking her the normal questions about early pregnancy symptoms. I felt pregnant and excited with all of the opportunities ahead. I recall telling my mom and my husband “I don’t feel pregnant anymore.” I did not have any bleeding or cramping at this point, but just a gut feeling that something was not right. My mom assured me that this was normal in early pregnancy and that symptoms would come and go. At my 11-week appointment, my OB attempted to detect a heartbeat via Fetal Doppler.
*For those who do not know this, fetal heartbeats can be detected on Doppler at eight or nine weeks and consistently at 12 weeks and on.*
He was unable to detect one after several minutes of trying. He then requested an ultrasound. I was alone and feeling very uneasy at this point. The ultrasound tech passed the wand over my stomach quickly and then switched to a transvaginal ultrasound and excused herself to go get my OB. My heart sank in this moment as my mind raced contemplating the possibilities. My OB confirmed that there was no heartbeat and that the baby was only measuring around eight weeks gestation. This indicated that the baby passed away shortly after our first ultrasound. I was alone and heart broken. I called my husband and was unable to reach him. I called my mom who was 20 minutes away sobbing. I was escorted out of an alternate exit and lead to my car. My mom met me in the parking lot, and I was finally able to reach my husband to deliver the devastating news. We cried together for the next several days. My options at this time were to see if I would miscarry normally or proceed with a D &C. My OB’s recommendation was to proceed with a D&C as my body had not recognized and initiated the process of miscarriage. I was also at an increased risk of infection and other issues moving forward with future pregnancies. I proceeded with a D & C ironically on October 15th (National Pregnancy and Infant Loss Remembrance Day). I was in shock and disbelief in the days following. An emotional and hormonal wreck. We had told several family members just prior to my 11 week appointment. I now had to face telling those people about our loss. Several people reached out to me with similar experiences of miscarriage and loss, which to me was reassuring and helpful in the healing process. Miscarriage still seemed a taboo subject at this time. I was not offered much support in my recovery.
Our Second Loss
We decided to try again. I found out I was pregnant at the end of January 2016 with an early pregnancy test. It just barely turned positive in the allotted time. I was just over four weeks. At this time, I was battling a horrendous sinus infection. The pain was escalating and made me want to pull out one of my teeth. Before I would take any medications, I wanted to be sure that I was pregnant. I went to my Primary Care Physician for some relief. They also confirmed a pregnancy test that just barely turned positive. I was placed on a safe antibiotic for pregnancy. I began bleeding the next day at five weeks. I immediately called my OB office and explained my situation and concerns. They had me come in for blood work to confirm pregnancy and would retest me in 72 hours to see if I was in fact miscarrying. The bleeding continued and after 72 hours, my HCG levels decreased indicating miscarriage. The phlebotomist taking my blood introduced the idea to me that some women just spontaneously miscarry and can’t have children. I remember being angry at this thinking, “Why the hell would you ever say that to someone going through this?” At my follow up appointment, it was termed a “chemical pregnancy.” I remember thinking, “What the hell does that mean?” My OB explained, I was pregnant enough to test positive, but the baby did not firmly implant to be a successful pregnancy. I remember having so many questions after this. “Was I even pregnant? Does this count? Is this really another miscarriage? How many women go through this without even knowing and just mistake this as a late period? Is there something wrong with me that I can’t have children?” The worst part about this pregnancy was the self-doubt and concern I had for our future as parents. I remember voicing these concerns to my husband, who was always supportive and reassuring during my recovery. It was after this second miscarriage that my anxiety spiked.
Infant Loss: Our Sweet Noah
We tried again and were blessed to be pregnant in May 2016. I was a nervous wreck. My mind was riddled with self-doubt and concerns. My husband was constantly reassuring me. I was placed on Progesterone by my OB in the early stages of pregnancy to assist my body in maintaining this pregnancy. I made sure my husband accompanied me to every appointment for moral support. My anxieties eased as the pregnancy progressed and I was able to feel the baby move. At 20 weeks, our anatomy scan US indicated that I had more amniotic fluid than normal and that our son’s long bones were slightly shorter than should be for the gestational age. We were sent to Akron Children’s for another scan and assured that he was growing fine but would be monitored through the remainder of pregnancy. Closer to my due date, my last US indicated that our son would be small at birth, likely only weighing 6lbs. At 41 weeks, my water broke and I labored for 12 hours. Every push lead to a dangerously low fetal heart rate and an emergency C-section was decided. Noah Joseph was born January 2, 2017 weighing 7lbs 5 oz. and measuring 19 inches long. Perfectly normal and healthy albeit with the cord around his neck like many babies, but no complications. I often think back to this and consider that without modern medicine Noah would have died in birth or both of us.
The next few weeks were full of lots of learning as new parents. Noah was very normal and healthy at his checkups. He was so sweet and we were thrilled to be new parents. At five weeks, he had his one-month checkup. Noah was growing well without any concerns raised from the pediatrician or us. That was the last day that we would spend with him.
We followed the ABCs for safe sleep to a T. Noah slept right beside our bed in a bassinet. One day I woke from sleep to find him in a state of emergency- blue and gasping. I called 9-1-1 and proceeded to tend to him the best that I knew how with infant CPR, but it was too late. It felt like an eternity waiting for the ambulance. They preceded to assist with CPR until we were delivered to the local hospital. I prayed and pleaded to God the whole time. They were able to recover a pulse at our local hospital after a lengthy process. We were transported up to Akron Children’s Hospital by ambulance due to the weather. They tested and did everything they could, but Noah kept failing. Later that day on February 12, 2017, Noah passed peacefully in our arms.
We were told that Noah’s death was related to Sudden Infant Death Syndrome (SIDS). An autopsy was performed, and the results would not be available for several weeks. I had so many questions.
I was in shock and utter disbelief. My whole world was shattered. I remember thinking after he was born “We made it. We made it through the pregnancy and delivery!” No Miscarriage, no still born, no post birth complications. I was angry for a long time after this. Questioning everything. Analyzing everything. “Could I have done things differently? Would it have made a difference?”
Our families were supportive, but didn’t know how to support us. This was a different type of loss than someone who had died of old age and lived a full life. Our lives were just beginning together. We grieved Noah and the loss of the life we should have had together. Our families reassured us that we did everything we could have and this was just a tragic event.
The autopsy results confirmed SIDS. Noah’s organs were all properly formed. There was nothing to indicate why this had happened. We met with several Palliative Pediatricians, as well as a genetic counselor. We were assured that we had done everything possible the right way and that this just happens to some children. This gave us some closure, but how do you move forward? How do you heal from losing a child?
The Recovery
It is not a simple matter. My heart was broken as was my husbands. I remember literally having an ache in my chest from my grief and feeling completely broken and devastated. Experiencing two losses before Noah made me question a lot about me our future as parents.
I cannot say enough about the Palliative Care Team at Akron Children’s Hospital. They were simply amazing and supportive through the next steps after Noah passed. They helped us make keep sakes, which I will forever cherish.
My husband and I attended grief counseling. I didn’t know what to expect. I had never needed services like this before, even after my dad passed suddenly when I was 22. I learned a lot about the five stages of grief being cyclical instead of linear. (Denial, Anger, Bargaining, Depression, and Acceptance)
Some people never reach acceptance and continue to cycle through stages 1-4. I learned several things about my grief, my husband’s grief, and how we grieved differently. We learned how to be there for each other and how to grow and support each other instead of pushing each other away, which can typically happen after the death of a child. Reflecting back, this was such a valuable experience. This is always my first piece of advice that I insist/recommend for newly bereaved families.
I was depressed for a long time. I was functional, but lost interest in things. I faked being ok at work and with family and friends. I was angry at the world and God for a long time and was more grumpy and short with people. I tried to avoid things that I knew would trigger me. (Facebook pregnancy/birth announcements- Thank Goodness for the snooze function). My family was a huge support and was very understanding of my emotional state when I would trigger. Little things that I thought I could handle (nieces/nephews birthday parties) would send me into a tearful mess because I was robbed of those events for my own child. I returned to work as a physical therapist in a nursing home and the “how many children do you have?” question comes up often and would always trigger me. I didn’t have the typical answer that the questioner expected. Yet, if I answered “none” I felt like I wasn’t honoring Noah or my other babies. I became grumpier, which was not my usual self, and I began to notice it. I am sure others did, too.
I have always been a positive and upbeat person, and when I realized how grumpy and depressed I was, I decided I needed to change. My light had gone out, and I would never be the same person ever again. I had been through too much to be the same person. I made the decision that Noah’s death would not define me. I didn’t like the new sad and grumpy me and used that to help me trudge through until I found my light again and forged the person I am today.
I made a plan, lots of them actually. I am a planner, which was very helpful in moving me forward to get through my grief and depression. My husband and I made plans for building a new house and selling the one we were in. I kept busy with exercise, baking, and gardening (things that interest me). I started to try new things that I had put off before. I became braver in voicing my thoughts and opinions at work, which lead to greater responsibility and promotion.
Part of my plan included seeking more support. I had a friend reach out to me several months after Noah’s death and suggested some local support groups. I joined several Facebook support groups and read posts from women who had been through similar devastations and losses. I found it reassuring hearing and knowing that we are not alone in our experiences. When I was comfortable, I would share my advice or condolences. Akron Children’s Hospital Palliative care team called frequently in the first year to check in on us and offer support. They weaned us off after two years but still send birthday cards. The woman who called, Ginny, had also lost a child and was very helpful in guiding me through some of my feelings. She introduced us to other support groups, as well as an annual event held to remember deceased children through the hospital. (This is available to anyone who has lost a child).
We planned celebrations to honor Noah’s life. I chose to do a random act of kindness on his birthday each year. The first year, I took a gift to the hospital to be given anonymously to the first boy born on his birthday. We held two successful charities in the next two years in support of SIDS Awareness and Research. More recently, we planned a memorial garden at our new house that I plan to have my living children help tend and add to each year to honor him. I even started a scrapbook to share his good deeds with our living children.
A part of me will always be missing. Noah is forever in my thoughts and in my heart. His memory will live on in the acts of kindness I choose to spread each day to honor him. I still have moments of weakness and grief when I think about him and our experience. I plan for these and do my best to allow myself an appropriate amount of time to grieve, but I don’t let it consume me. It will if you let it.
Miscarriage and infant loss has lost its stigma in the last five years. More people openly talk about their losses in public format. There are more support groups and events available now and offered more freely after a loss.
Nearly five years after Noah’s death, my husband and I are still together. We have two living children together: Evan (three years old) and Hailey (20 months). We had another miscarriage last spring at eight weeks. We continue to use our experiences to move forward and stay strong for each other. It will always be tough losing a child at any age, but we have developed some healthy coping strategies to move forward.
In Summary
Here is what I have learned through my losses.
• You are never the same after losing a child, whether it is miscarriage, stillbirth, infant loss or child loss.
• You can be stronger than you think. Don’t ever give up hope.
• Make a plan to succeed moving forward.
• Seek support in others and/or God/religion.
• Remember to give yourself grace in moving forward toward acceptance. “Rome wasn’t built in a day” and neither will the new you.
• Have patience- healing takes time. (Lots of it).
• Grief is cyclical and will hit you when you least expect it. Have a plan and be prepared for it.
• Be kind to yourself and those around helping to support you.
• Live each new day the way that would make you and your angel baby proud.
October is miscarriage and infant loss awareness month. I am honored to share our story and hopefully inspire those who need it. My husband and I are always willing to help those that need guidance after such an experience as infant loss or miscarriage.