“You’re going to be monitored extremely closely throughout your pregnancy, you are considered high risk” the words no-one wants to hear is what we heard at our 12 week ultrasound. As soon as I heard those words, I heard nothing else. I heard the words, but I didn’t hear them if that makes sense. Tears silently streamed down my face. I was speechless while Lee asked all the right questions. This would be a trend throughout our appointments moving forward. I would cry and Lee would ask the questions and then explain it to me once I pulled myself together.
Our sweet baby was diagnosed with a rare birth defect called Gastroschisis. So rare in fact that my document is underlining it telling me it’s a spelling mistake… no, not a mistake. A harsh reality for first time, scared shitless parents.
If Gastroschisis sounds as foreign to you as it did to us, it is a birth defect of the abdominal wall. The baby’s intestines are found outside of the baby’s body, exiting through a hole beside the belly button. The hole can be small or large and sometimes other organs, such as the stomach and liver, can also be found outside of the baby’s body. If you have not heard of it, you will likely take to Google, and I want to warn you, it is quite graphic.
Like most traumatic experiences, there are different phases of coping. The first was complete shock and devastation. How could this be happening? Why us? And of course the guilt. What did I do to cause this? I forgot my prenatal vitamins that one day. That had to be it. I took on too much stress in the beginning and was pushing myself too hard. That also probably added to it. I had a glass of wine while I was pregnant and didn’t know it. Yup, that was for sure it. For the first few weeks, all I did was run through every scenario and decision I made in those first few months to try to find out how or why this happened. I have since come to the realization, I will never know why our sweet babe has to fight this fight. But, leave it to my mom to say the right thing:
“This baby was waiting up in Heaven for you and Lee. God chose this baby for you two because He knew you could handle this. You two are strong and will give everything and anything for this baby to be healthy”.
And just like that the anger left my body. Now, don’t get me wrong it creeps in every once in a while. I still have pity parties and feel those “why us” feeling, but when they do I remember those words and they help. The anger is replaced with hope and a determination to be the strongest version of myself for this baby.
The next stage for me was grief. I had to grieve what I had always dreamed my babies birth would look like. The picture society paints for you is so beautiful. The final push, that precious skin to skin time immediately after, the snuggles and first feedings in the mother baby unit, leaving the mother baby unit with a baby only a few days old, the newborn photo session, and the list goes on. These are all thing I heard my friends describe as the most beautiful part of birth. Those would not be a reality for us. Immediately after our baby is born, their body (from the chest down) will be put into what looks like a clear plastic bag to protect the organs, and sent off the NICU to prepare for surgery. Lee will go with baby and I will stay in the mother baby unit to recover. No skin to skin time, no newborn snuggles, no breast feeding, no alone time as a family of three. Wow, I am definitely having a pity party as I am writing this.
Moving onto the third stage. It’s hard to keep up I know. Throughout this whole process, I have learned to practice gratitude even more than ever. I am grateful I was able to get pregnant and carry this child. Grateful my pregnancy has been good to me. Physically, I have been feeling relatively good. I am grateful they diagnosed the baby at such an early stage so we can be prepared. I am grateful for our healthcare system. The specialist and ultrasound appointments I have every two weeks where we get to see our Bub. Grateful for my niece who was born with a rare heart condition but is not defined by it. She is a true warrior and seeing her reminds me how resilient babies are. Last, I am beyond grateful to have the best partner I could ask for. Lee has been my rock through this all. He is constantly researching, asking the questions while I cry those silent tears through nearly every appointment, taking me to the hospital without question when I have the tiniest spot of blood, holding me when I cry, cracking jokes at just the right time, and reassuring me when my mind is spinning and taking me to dark places. I cannot imagine going though this with anyone else.
This blog post is getting longer than I anticipated it would. It is quite frankly turning into a little bit of a mini therapy session and you all just happened to be along for the ride, haha! But before I wrap up, I know you likely have a lot of questions around our specific case. Although we won’t know exactly know how severe it is until baby is born, we do know that our baby has Gastroschisis not Omphalocele which are commonly mistaken for each other. Our babies hole is very small and to the right of their belly button and as of right now only the small intestines are out. Once the baby is born they will asses the health of the bowels and make a more solid plan from there. But from the research we have done and the conversations we’ve had with our doctors, this is how we think it will go…I know it won’t be exactly like this but it’s nice to have some kind of idea.
-baby will be born naturally or via c-section. We are not sure, they say natural is best but like ANY birth C section is always a possibility.
– baby will be wrapped up to protect exposed organs and taken to NICU for assessment. The health of the bowels is really important. Because they have been floating around in amniotic fluid, they aren’t protected and can often times be damaged. Blockages can occur, swelling, and parts can be dead which means sections may have to be removed. From what I understand, once the bowels are healthy and working, they will go for surgery to have everything put inside.
– once baby is recovered from surgery they will then work on feeding. Because the intestines have been damaged, they often take quite some time to start working properly and this is mainly what will determine the length of time spent in NICU. Some babies are recovered and home within 14 days, others 9 months, and some are in and out of hospital their whole lives.
For us, the scariest part is the unknown. But, I am trying to focus on what we do know and that is the specialists, surgeons, nurses, Lee, and I are going to do everything in our power to get this baby healthy! They say it takes a village to raise a child and for us that is going to be one hell of a village!
So, when you see me posting on Instagram about snap onesies instead of zippers, it’s not because I’m a “rookie mom who will soon learn”, it’s because our baby will likely not get to wear clothes for the first few week maybe even months of their life. If they do, they will have to be buttons so the cords (I’m sure I will learn the medical term for these real soon) can go through. And yes, I am a super keen new mom for packing my hospital bag at 27 weeks, but these babies come notoriously early. In fact my doctor will induce me immediately if he sees something that he isn’t comfortable with. So, although I share a lot on Instagram and with this community, I don’t share everything right away, sometimes I need time to process things and this was one of those things.
I have put off writing this blog post for 15 weeks to be exact. I feel angry and upset that I have to write this. Well, I suppose I don’t have to, but this is our reality and one way to cope will be to connect with others who may have had the same reality as us. Our specialist has informed us that there are on average three Gastro babies born each year in Regina and surrounding area. So, I am hoping that through this community I will find other Gastro baby mama’s and we can connect and support each other. Having a baby diagnosed with a rare birth defect is hard, but not knowing anyone who has gone through the same thing makes it even harder. It can be extremely lonely at the best of times but even harder in the middle of a pandemic. If you or someone you know is going through this, please reach out. We would love to connect with you.
And last, I have come to realize that having a healthy baby is more rare than you might think. SO many things have to go right in order to have a healthy baby… those are the true miracles. Babies who are born with some sort of defect or health setback, those are called warriors.
My sweet Bub, you are only 27 weeks old yet you are already such a fighter. I am so proud of you.