Mom to Isaac and Porter
November 16, 2011
It has been over a year since we lost our twins [at time of writing] and honestly their story doesn’t get any easier to write.
My husband and I planned my pregnancy and were fortunate enough to get pregnant very quickly. I was over the moon excited, but nervous during the first trimester. Once I made it to thirteen weeks, I breathed a huge sigh of relief and started to plan our future with our baby. I had no idea that anything could happen beyond that point. Stillbirth was something that happened to people I didn’t know or at least rarely enough that it wouldn’t affect me.
My pregnancy progressed normally. Every time we visited the OB she picked up a really strong heartbeat right away. My belly was growing much quicker than I expected and many friends and family brought up the idea of twins. Honestly I thought of it too. I looked up the signs more than once, but I figured if I was pregnant with twins the OB would have found two heartbeats and she never did. I never in my wildest dreams thought I could have a baby without a heart.
When I was twenty weeks pregnant my husband and I went for our first ultrasound. I had thought we were having a boy from the beginning, so I wasn’t surprised when the tech told us we were having a healthy baby boy. I shared my concerns about having twins with the tech and he agreed that I was measuring quite large, but assured me I was just having one healthy baby. A few minutes later however he moved the probe to the left and uttered the phrase that would forever change my life.
“Well you have twins, but this one is grossly abnormal.”
Visions of what exactly could be wrong with my second child flashed through my mind and I started to tear up. I asked what was wrong with our baby and the tech told us, “well for starter’s he doesn’t have a brain.” The words no parent wants to hear, ever. At this point the tech had no idea what he was seeing and he assumed our second twin had already passed away. Then our sweet little Porter started to kick his legs and I’m sure sent the tech for another spin.
We sat down with a doctor following our ultrasound and learned that Porter would never make it past birth. He would be lucky to make it that far. He was not a viable baby and we would need to see a perinatologist as soon as possible.
I held it together in the doctor’s office. I held it together in the elevator and until we got to the car. Then I burst into tears and sobbed like I have never sobbed before. I calmed down enough to call our parents and asked them to pass on the information. Then I went home, held our ultrasound pictures and cried.
The next morning we met with our perinatologist and he explained that our twins had a rare condition called TRAP Sequence. Basically Porter hadn’t developed correctly and was missing vital organs (including a heart) and Isaac (our healthy twin) was pumping blood through their shared placenta to Porter and back to himself. Our little 20-week old Isaac had been doing the work of two hearts this entire time.
This put Isaac at a huge risk for heart failure. We had two choices: wait it out and hope that Isaac didn’t go into heart failure or have a surgery to cut off the blood supply to Porter. We were told that if we didn’t do the surgery the odds of Isaac’s heart failing were over 75%. On top of that if his heart showed damage, he would be born prematurely because there is literally nothing they can do for a failing heart in the womb.
We decided to give Isaac a shot. We both struggled with the decision, but we knew that Isaac had a chance and our sweet Porter did not. We scheduled the surgery and flew to San Francisco the following week to have it done.
I ended up having the surgery twice. The surgery failing the first time had only happened three other times in the history of the hospital, but our boys were obviously terrible with odds. On October 14, 2011 the second surgery was successful and we lost our Porter. Isaac had a 90% chance of survival following the surgery and showed no damage to his heart. We flew home and dealt with the loss of Porter (I would continue to carry him until Isaac was born).
I was finishing my last semester in school and dove back in to make up for the time I had lost. I struggled a lot during that time. I still very much looked like I was going to give birth to twins and it seemed like everyone commented on it. People didn’t know what to say when I told them the truth and I didn’t know what to say when I just let them be excited about my twins.
On November 15, 2011, I had a busy day at school. I was finishing some papers and had a presentation so I was distracted all day. Towards the end of my last class I realized that I hadn’t felt Isaac that day. Usually he moved so much that he distracted me during my classes. I poked my belly a bit and finally left class and went to the restroom. I poked and moved my belly to try to get him to move, but I felt nothing. On my way home from school I considered going to the hospital, but I convinced myself that I was being silly.
I went home and explained to my husband why I was worried. I drank some juice and laid down and tried again to get him to move. Finally as a last resort I took a bath. Isaac always moved while I was in the tub. My husband called our OB and while he was on the phone with her, Isaac kicked me twice. I breathed a sigh of relief and told my husband it was fine. It was the last time I ever felt Isaac.
That night I woke up and knew something was wrong. I woke up my husband and we went to the hospital. The nurse couldn’t find a heartbeat with the Doppler, so they brought in an ultrasound machine. As soon as they put the probe on my belly, I knew it was over. We had seen Isaac’s heart on so many ultrasounds and we knew what to look for. A doctor was called in and they debated because one chamber of Isaac’s heart showed a small flutter. They didn’t know if it was his heart, very weak, or my own pulse. They discussed doing a C-Section if it was Isaac’s heart still beating weakly. I asked if there was any harm in doing it, just in case. They said no, asked for a verbal consent, and wheeled me away. Isaac and Porter were born ten minutes later.
I was put out for my C-Section, but my husband told me that they tried to resuscitate Isaac for ten minutes before asking for permission to stop.
When I woke up, my sweet husband and our parents surrounded me. A kind nurse explained to me what had happened. Since I was on heavy medications from the surgery she had to tell me over and over. I am forever grateful that she took this on and spared my husband that part of it.
Our boys looked beautiful. Porter was wrapped like a present, so we didn’t see his physical form but since they are identical twins we know what both boys look like. Isaac looked like he was sleeping. He was the most beautiful thing I had ever seen and I couldn’t believe that I wouldn’t get to take him home. He weighed 1 lb. 14 oz. and was 14 inches long. I couldn’t believe how much he looked like my husband and how much hair he had for a 26 week old baby.
We spent a peaceful day with our boys and our various family members and then we said goodbye. I was stuck in the hospital for a few days, but our parents jumped in and helped us plan the funeral.
Leaving the hospital and seeing all of the families leave with their newborns was hard. We had a car full of gifts and flowers, but empty arms. When I got home and realized I would have to eventually pack up their room, that was hard too. Everything was hard.
The day we buried our boys, we were able to see them one last time. We kissed them and laid them in their shared casket. My sweet husband tucked a blanket around them and we said goodbye.
Time does not heal all wounds. I have found happiness in the last year. I have found hope. But I have not found it easier to be without Isaac and Porter. I will miss them until the day I die and see them again. I ache for them daily. I have found ways to deal with my grief (some healthy, some not), but it seems to wash over me like a wave sometimes. Sometimes I want to yell and scream and cry because I hate TRAP Sequence and what it did to us. I hate that our boys were the 1% of the 1% and that we didn’t get to bring either of them home.
I am grateful that I have had my husband through all of this. We understand each other like no one else can and for that I am truly grateful. I am also grateful for the strength I have found in God. There have been so many times when I have sought peace and found it. It seems impossible to me sometimes that I can feel peace through any of this, but I have.
Kimberly can be contacted at email@example.com
and her blog at http://jacobkimberlypalmer.blogspot.com/