"Just 20 weeks on earth inspired a complete change of career focus."
Two Boys Two Years Apart
Caleb’s story starts in my first pregnancy with my son Baker. At that time, I was an OB/Gyn resident physician. Given my profession, I knew about all the things that could go wrong during a pregnancy, but I was optimistic and blissfully naïve that these things would actually happen to me. During my 20-week ultrasound, they discovered a hole in is bowel. We underwent more testing (MRI’s are definitely not comfortable when you are pregnant) and met with specialists who prepared us for the worst – a NICU stay, surgery shortly after birth, long term digestive issues, etc. However, Baker surprised us all. He was completely healthy at birth.
So, when I became pregnant again, I thought my “bad things that can happen to you during pregnancy” card had been stamped. But, nonetheless, I was worried that something could go wrong and tried to keep a positive outlook. It didn’t take long to hit our first bump in the road. At our genetic screening ultrasound at 12 weeks, my baby had a thickened nuchal fold which can be associated with a genetic abnormality or a heart abnormality. Due to this, we had a more sensitive genetic screening test performed, the NIPT test. I waited on pins and needles for this result to come back. But, luckily, about a week later, we received a normal result! There was no evidence of Down’s syndrome, trisomy 13 or 18. And, we found out we were having another boy!
Several weeks later, we had a family vacation in Florida. As my husband and I walked the beach, we talked about baby names (we decided on the name Caleb) and how our lives would be with two little boys aged 2 years apart.
A Devastating Diagnosis
I was positive and looking forward to the future when I walked into my anatomy ultrasound a few weeks later. This is where the floor fell out from beneath me.
The ultrasound tech was taking longer when she was scanning several different organ systems. I could tell that something was wrong. I felt my heart begin to race and my anxiety was bubbling up. The several minutes when the ultrasound tech left the room to review the images with the physician were agony. When the physician returned, she explained that our son had multiple anomalies – a large cyst in his brain which caused a portion of his brain to under develop, abnormalities in his genital/urinary tract, and a suspected heart defect. Given how many different organ systems were affected, there was a high suspicion for a genetic issue and before I knew it, I was undergoing an amniocentesis (which involved introducing a needle through my abdomen to sample the amniotic fluid and obtain cells for genetic testing).
I left that appointment with a mix of emotions: worry, hopelessness, confusion, love for my baby and anger. I clearly remember passing a pregnant woman in the hall who was on the phone talking loudly about how she was so sad that she was having another boy. It took every inch of my self-control to not scream at her.
We had to wait about 10 days for the genetic testing to come back. During that time, I mobilized. I called high risk OB specialists from residency, my best friend from medical school who was a neurosurgeon, and anyone that I could think of who would have a clinical opinion to add. I researched, a lot. I prayed, a lot. I talked to Caleb and begged him to heal. I desperately tried to stay positive. We had been down this road (albeit a much less complex road) before with our oldest son, Baker, and everything turned out ok. Quiet moments were the worst. My mind would go to really dark places. I had to turn the TV on to be able to fall asleep at night. If I was at home during the day, I would take long naps so I could turn my brain off. At times, I fantasized about running away from this situation. However, I was quickly brought back to reality when I would feel Caleb kick. How could I possibly run away from my baby that was in my own body?
And finally, the call from the genetic counselor came when I was in clinic seeing patients. As I answered the phone, I had a momentary burst of confidence that everything would be ok as it did during Baker’s pregnancy. But, things were not ok. Caleb had a very rare chromosomal abnormality. A large portion of one of his chromosomes had duplicated, and this particular abnormality was associated with horrible outcomes – deafness, blindness, profound cognitive and physical disabilities, multi-system organ dysfunction, possible stillbirth, possible death after delivery. As I processed this news, it occurred to me that no amount of surgery, medical treatment, time, love, two physician parents, and a good support system could fix our little boy. I broke down and ran out of my clinic. I got to my car and screamed. I was momentarily startled by the sound that left my mouth. I have never made a sound like that before and I hope that I never do again.
There are no words to describe how difficult the following days were. My husband and I struggled to come to terms with this diagnosis. We spoke with the genetic counselor again as well as other medical specialists. I desperately tried to find positive news or find out that this was all a big mistake and that everything would be ok. But there was no positive news. There was no treatment that would fix the damage that his genetic abnormality was inflicting on every aspect of his body. He would need multiple surgeries to survive but none of these surgeries would help him thrive. And, the thought of the pain that he would experience without the mental ability to understand what is going on literally broke my heart. The life that my own son was destined to lead was something I wouldn’t wish on my worst enemy.
The Most Difficult Decision
As a mother, I would do anything to take away pain and suffering from my children. So, I made the most difficult decision of my life, to stop Caleb’s pregnancy. I chose to be induced so that I could deliver Caleb and hold him. The induction and delivery were a blur. I delivered Caleb, who was born still, on June 25, 2013.I spent over 2 hours with Caleb after he was born and I am so thankful that I have such clear memories of this time with him. I held him, rocked him, kissed him countless times, talked to him, prayed over him, and listened to music with him (Leonard Cohen’s Hallelujah always brings me back to the time I spent with him).We had pictures taken and we also had him blessed by the chaplain. The time I spent with Caleb is one of the most treasured experiences of my life.
Navigating Grief and Pregnancy After Loss
I left the hospital with empty arms and a broken heart. Mentally, I remember thinking that I was so prepared for the grief that follows a pregnancy loss as I had taken care of many families who had experienced loss. However, I was naïve to grief and I was totally unprepared for the emotional and mental journey that I was on. I was in a haze the first several weeks but was so fortunate to have a strong support system in my family and friends. After 3 weeks, I returned to work and the fog began to lift. It was at this time that I really began to struggle. I missed my son so much that my mind, body, and soul ached. The grief I felt was overwhelming and also unpredictable. I would be ok one moment and completely debilitated the next. Each day was such a struggle to get out of bed, get dressed, eat, let alone try to be functional at my job. The one thing that kept me grounded was my living son Baker. I had to hold it together for him. He literally was my lifesaver during those first few months.
Several months later, I was pregnant again with a daughter, Amelia. Thankfully, medically her pregnancy was very smooth. On the other hand, mentally things were the antithesis of smooth. There aren’t words to adequately describe the mental space of actively grieving a child while at the same time expectantly awaiting the arrival of another child. I definitely did a lot of “pregnancy avoidance” meaning I didn’t talk about the pregnancy and I dressed in oversized clothes to try and hide that I was pregnant. I just couldn’t bear the questions of “is this your first pregnancy?” and “do you have other kids?” I white knuckled it through 38 weeks of pregnancy to deliver a healthy baby girl. And, with much relief, I found that I had no issues bonding with my baby girl once she was outside of my body.
A Special Connection births the Hope After Loss Clinic
In the first year following Caleb’s death, I continued with my general OB/Gyn practice. I initially found it incredibly difficult to care for patients who were experiencing pregnancy loss. My grief was too raw. However, with time, I found that I had a special connection with patients who were experiencing loss or who were pregnant after a prior loss. I had an intimate understanding of the mental and emotional journey that they were on. And, I let this insight influence the way in which I provided care and I would personalize my approach to each patient. And, I began to see the benefits of this personalized and supportive approach to care. It was through these experiences that my desire to start a pregnancy loss clinic was born.
What I soon realized is that there is no blueprint to starting a pregnancy loss clinic. So, I spent about 2 years educating myself about all things related to pregnancy loss. I strengthened my medical knowledge regarding loss. But, I spent most of this time educating myself about the mental and emotional aspects of pregnancy loss and pregnancy after loss. After 2 years of planning, education, preparation, the Hope After Loss Clinic was born. And, 4 years later, the clinic is thriving.
It has been so rewarding to be able to provide care to families who have experienced loss and walk alongside them during their grief journeys. It is crazy to think that my son Caleb was only on this earth for 20 weeks in 2013 but, despite this short time, he has inspired me to completely change the focus of my career. And, that his short physical existence has had ripple effects (hopefully positive ones!) on other families who experience loss. He has profoundly changed who I am as a person, a mother, a wife, and a doctor. I will be forever grateful to be his mom.
Submitted with love by Caleb's mom, Kristen Sharp