A Mother Reflects On Her Bicornuate Uterus And Her Preemie Who Thrived

Gail is a California native, currently living in San Ramon. She works as an Area Director and is a licensed Occupational Therapist. She spent the first half of her career in direct care and has been doing management-level work since 2006. “I have an amazing husband who loves and supports me with so much passion and dedication. He is also a wonderful dad to our kids; from building tree houses to playing chess, I feel lucky to have him on my team. We have two boys; ages 2 and 5, both full of energy and hard to keep up with.” Read about Gail and her experience giving birth to a beautiful preemie who has thrived ever since:

I had given birth to a baby boy two and a half months early weighing in at 1.16 pounds.  I don’t remember that last time I said that out loud or even to myself.  I remember it happening and then after the first year, I wanted to put all of it into a box and lock it up far far away as if it never happened.  The problem is, it never went away and it stayed with me like a deep wound that healed into a scar lighter than my skin tone so that every time I had a glimpse, the memory would pierce so deeply.  It was so painful; not the birth, that was easy compared to what came after the birth.  I was sad, disappointed, and it was really lonely.  I wish someone understood and still, to this day, I don’t feel like anyone does.  Fortunately, I have the most amazing husband who would do absolutely anything for us and he did since day one of this journey.  I remember sharing his story on social media and then writing it in a journal, that didn’t help and I think it only made me feel worse.  I wasn’t sure where to go and started with therapy and had the comfort of my husband.  Was I depressed?  I’m not sure, I know that I fought and that I had to say to myself every single day “be the best to make him the best” and so I did.  Here we are nearly 6 years later, it still breaks me but I am now at a point in my life where I am proud to say “he has defied just about everything and he is the most resilient and brilliant child, he is my miracle.”  

I was nearly 3-4 months pregnant and measurements were showing a slow growth based on the size of his femur.  I had to be monitored every month, then every two weeks, then every week, then every other day, and then every day, until they had to put me in the hospital for a full monitor.  I was on bedrest for maybe 4-6 weeks and I was only allowed to use the restroom or take my dog for a quick walk.  That was not fun at all!  I was sick of being on my side and back.  At about 6 months they were able to see my uterus stretched out and found a septum in my uterus calling it a bicornuate uterus.  Supposedly it’s a birth defect I never knew of and happens in 1 in every 200 women.  A typical uterus is like an oval and mine was more like a heart, separating into two chambers and only allowing little space for the placenta and baby to grow.  With that, I could only carry him for so long because the nutrients to the placenta was limited because of the limited space.  I was upset, why couldn’t they find this earlier?!  Well, truth is that they never do until the day a child is born or when the uterus has expanded when the baby is near term.  The day I went into the hospital I remember calling my best friend Annie telling her how completely horrified I was.  I was belligerent, crying, and afraid of what might happen to the baby. 

I remember seeing the look on my husband’s face, it looked like he saw a ghost, but he was being so strong for the both of us.  So I went in, emergency C- section.  I remember this so clearly that I can quote the neonatologist's words “he is stuck, I can’t get him out, I need to go all the way in.”  There was so much going on, I didn’t hear him crying, and I was taken away.  I stayed maybe 200 feet from the NICU and I made Darrel, my husband, stay with the baby.  On the second day, he did the best job trying to tell me the worst news.  He started with “the baby is fine, everyone is good…” He went on to tell me that Wesley had coded, he was “bagged,” and then was back.  Sorry, I really can’t say or even type the words to describe the near loss.  Anyway, I’m shaking just saying this so I’ll leave that one in the box for now.  I spent 10-15 hours a day for 90 days with Wesley.  He was on a ventilator, oxygen, feeding tubes, you name it.  The first 2 months were hell on earth and then he graduated to the outer wing, which meant he was not dependent on oxygen and could be near a window with sunlight.  Eureka.  His grandmother came every single day to read him a story with his little incubator window cracked open, that just meant the world to me.

Around two and half months they had to do surgery on three hernias, this was another tough event.  The total 90 days, wow that was just surreal.  It was spent trying to help him gain weight, machines helping him wean from oxygen, the beeping, the alerting, and it was just all so much.  The nightmares came after the 10+ episodes when his heart rate would drop along with his oxygen and nurses would come running in to help.  That was just the worst.  I could still hear the beeping, I would pay a lot of money to get rid of that memory.  Anyway, we made it home and spent the next two years doing early intervention, therapy, and giving him loads of TLC.  

Skipping 4 years later and happy to report that he is amazing.  He was first developing slowly, had reflux disease, and other issues but nothing we couldn’t handle.  He had physical therapy, occupational therapy, and feeding therapy that filled every single week.  I also took an infant massage certification course to help regulate his sleep, appetite, and sensory awareness.  I was tired, frustrated, and still sad but I had to keep moving because it was up to my husband and I to advocate and help him catch up.  

Wesley is 5 and turning 6 soon.  He did it, we did it, he is incredible.  He was born at the 1-3rd percentile and now he is in the 26th.  His doctors and school interventionists say he is advanced cognitively and I couldn’t agree more.  Wesley loves to swim, play chess, make maps, and ride his bike.  He once said to me “come on mom, I checkmated you in 5 moves.”  

I remember someone told me once “god only challenges those who can handle it,” I don’t think that was the case here but do think it’s a blessed thought.   I am an occupational therapist, and I think working with him day and night on every single milestone was a blessing.  I committed to helping him be the best version of himself and, till this day and on, I will spend my life doing this.  He has achieved so much and I am 100% positive he is going to be someone great.  We call Wesley the 2 million dollar baby, which he was according to his hospital bill.  That bill was framed and now we can finally smile and laugh about it.  

How can friends/family support a family that’s in the NICU? - Food? Financial? Physically doing things like checking on the house or pets? etc.

That's a great question! I was in the NICU 10-15 hours/day for 90 solid days. I would say yes to the pets, to even take them in while the family is going through the transition. Food was really helpful as well, we really appreciated the frozen dishes that we were able to heat up at any time. Phone calls and support was huge. My best friends sat in the lobby with arts and crafts and helped decorate the NICU room for Wesley, they made an aquarium. It was amazing. Financial I think is the kicker, we didn't have financial support BUT we did have amazing insurance. I took off the year to focus on this therapy, which was maybe 3 days/week, and early intervention.

What were things you wanted to hear? Didn’t want to hear?

I wanted to hear "he looks great and making such good progress." I would cry when I heard "he is so tiny, he is so small, what happened?" Then it started to feel like it was my fault that I had this bicornuate uterus. It still sticks with me.

Here we are now…

For expecting mothers who have a “special” uterus and mothers who have had a preemie, just know that I understand the pain and sadness but I promise you that the clouds will part someday and you will see how truly amazing and resilient your child will be. 

- Gail G.

If you would like to connect with Gail, she is open to speaking with anyone who might need some guidance or support. Please e-mail cruz@milowekids.com and we will connect you.