During the Super Bowl this year, SickKids Foundation released a commercial with a girl named Kaitlyn.
She is 24 years old and was diagnosed with a rare disorder called VACTERL Syndrome.
So this hits close. Real close. VACTERL is part of what Adam was born with. You can see the E stands for Esophageal. By the grace of God he had no other anomalies, and wasn't considered VACTERL. It's not usually like that though. Usually babies are born with more than one. It's extremely rare to just have the isolated esophageal atresia (gap). Seeing this young girl, so healthy, at her age, accomplishing so much, absolutely shakes me to my core. It's amazing. It just really hits me how... Lucky - it's not luck though, how blessed we really are.
The flashbacks, the fear, of being pregnant and not knowing the extent of Adam's condition. Every week going for ultrasounds, juggling life, work, so much anxiety. Every minute in the NICU having extensive tests done around the clock to rule every possiblity out. Dealing with genetics when they are surprised it's "only the EA" and are up our ass for more tests to figure out why, because it's so rare to have such an isolated outcome. Being told that even though this rare it's amazing but we're going to have to stay for a year.
Not knowing how this will affect our baby later on in life. Will he swallow? Will he eat? Will he be able to sit at the lunch table by himself with his friends? Go to play on time? Eat breakfast and go to hockey practice?
Seeing this beautiful girl, grown up, becoming a nurse, with so many VACTERL issues, what she's accomplishing, when Adam only HAD the one....
The absolute guilt I feel. How can I even compare. How do I have the right to talk about this when my son is the way that he is now? Perfectly normal, like it didn't even happen. When he's not suffering from any of the other VACRL anomalies or associations. When he is the small percentage that is ok from all of this.
Why am I advocating and raising awareness when he's fine. When it doesn't affect us anymore. It's done, move on, be grateful. There are still families that are suffering every day, with what Adam didn't have.
I see it as how, why, how come he didn't have any of that when everyone else does? Matt quickly reminds me to ask instead, 'how come he was born with anything at all?!'
This is what I suffer with.
This is why I do whatever I can to help other people. Because I am in a position to do so.
It's not a bragging right. It's not a debt owed. It's not holding onto the 'one moment my child was sick' as someone so nicely put once. Though my baby didn't have any associated issues, we lived at the hospital every day and every night for eight months. My pregnancy was traumatic and absolutely ruined from the moment I found out during the anatomy scan.
Living in fear every single day, no diagnosis, no understanding of the extent of my baby's condition. Not knowing when he was born how long we were going to be there for. All. Day. Every. Day. He didn't see the sun for months. He didn't feel the breeze. He was attached to a wall, through suction, so he wouldn't die. He was intubated, unable to move, on hard narcotics when he was less than a year old. Poison in his system to keep him alive. Crying with no sound, no tears. Complications with his lungs they deflated for the surgery. Fed through the tube through his stomach. Meds. Throwing up the smallest of pieces of mushed food.
Sitting with a teacher at day care, who made sure his food was cut up small enough, who made sure he had a drink after every bite.
Not knowing if I CAN have another baby because I know that I CAN'T go through more ultrasound appointments. I can't re-live that fear, anxiety, trauma that even the thought of paralyzes my body.
But somehow feeling guilty because of where we are now. Regardless of the pain of what we've been through. Others have it worse, so I'm not entitled to feel my pain.
This is what I struggle with.
With both pregnancies, I received prenatal care at the High-Risk Clinic at Mount Sinai Hospital in Toronto. Once my sons were born, they were immediately attended to by a Sick Kids team working remotely out of Mount Sinai. The team worked until they were stable and then they were directly transferred to the Hospital for Sick Children.
Mount Sinai Hospital and the Hospital for Sick Children are world renowned hospitals. The reputations, as well as the team’s working with my family, made me feel 100% at ease. The hospitals work collaboratively to provide frequent meetings for families. The meetings included both the Mount Sinai OBs and a Sick Kids team to explain the plan, what to expect, and answer any questions or fears I had. At the time I was terrified but felt as prepared as I could be.
Now that I’ve gone through the experience, I believe that knowledge is power. The more you know going into a difficult situation, the better coping may be. Since I’ve beaten the perceived impossible odd and had two babies with Gastrochisis, I believe that my story can help fully prepare families with what to expect.
As mentioned in my intro, the hardest part for me was - and sometimes still is - the feeling of loneliness. This guide is solely based on my experiences and any medical explanations are from my perspective. The purpose of sharing these points is to help parents become ready and aware for the, sometimes very difficult, journey ahead of them.
Below I’ve lists factors that I believe are important know. That said, I want to point out that both my children’s conditions were complex and were not a typical Gastrochisis cases. In fact, it was explained to my husband and I that Theo, our first born, was one of the worst cases of Gastrochisis Sick Kids has ever seen. His first surgery was at 4 hours old and my husband was told he may not survive the surgery. I am noting this grim point because my boys went through the worst of it, and now they’re healthy and thriving. Remember, you will get through this:
What to expect and what helped me get though it:
What helped me get through it:
Having my spouse or a family member come with me. Despite having such thorough care, being pregnant with a sick baby is terrifying! I know how hard it is for a spouse to take so much time off from work, but you don’t have to go through this alone. Reach out to others. And if no one can come with you physically, tell a loved one when your appointments are and have them check in on you. Consider a FaceTime after the ultrasound or have someone come over for dinner the evening of.
Also - SNACKS! Oh man, when you think you have packed enough, add at least 2 more foods to your food bag and 1 more drink! Some appointments were terribly long.
Bring something to keep you mind off your appointment other than your phone. Examples include, a book, magazines, downloaded shows, etc. The internet connection wasn’t the greatest, so tangible distractions were helpful.
2. Expect: You may be a complete basket case when the baby is born What most people don’t realize in a Gastrochisis pregnancy is that women are able to have a vaginal birth. Keep in mind, this does depend on your hospital. Since I was being cared for by Mount Sinai and The Hospital for Sick Children, they had specialized staff who can readily handle complex births. If you live in an area where a team needs to be coordinated, you may have a planned c-section.
Also, when having a baby with Gastrochisis, you are induced at 37 weeks. Being induced isn’t fun to say the least, but it wasn’t as bad as I thought. There are two ways a woman can be induced. One with a gel and the second is with a foley catheter. For me, the gel was much more pleasant. My experience with the foley catheter was very painful, so if you have the option go for the gel! As well, it was explained to me that if an average healthy pregnancy were to be induced at 37 weeks, most babies would go into distress and need an emergency C-section. But for Gastrochisis babies, they are able to be born vaginally due to an increase in amniotic fluid.
For both my births, I had the OB team and Sick Kids team in the surgical room. This means A LOT of doctors, so be prepared to leave your pride at the door because a whole lot of people are going to be looking at your vagina. Once the baby comes out, you may have a quick peek at your new pride and joy and then the baby will be taken to the adjacent room where the pediatric team will get them stable. Once stable, I was able to have a quick visit with them and then they were taken to Sick Kids. Once YOU are somewhat stable, a transport team take you over in a wheelchair to see your baby.
Having a baby under normal circumstances is emotional, but when you’re seeing your baby for the first time and they’re in critical state it can be overwhelming to say the least. Then to see your babe stable but covered with wires and tubes is a whirlwind of emotions. I was happy, I was scared, I was exhausted, I was physically in a lot of pain, and I had so many questions but could not get the words out.
I wasn’t able to hold either of my boys for weeks. Something that I am slowly starting to share with others is that I didn’t feel a connection to either of my boys when they were first born. I’ve discovered that this was a coping mechanism. I believe that if my baby died, at least I wasn’t bonded with him. YES, this is some dark and scary shit! But it’s important to be honest and open up about my experience in the hopes of helping others.
What helped me get through it:
Have people come see you! With Theo (my eldest) I didn’t want anyone at the hospital as I thought it was weird to have visitors with an NICU baby. For me this was not a joyous and exciting time, I was terrified and felt so ripped off of my experience. However, the second time around, when I had Christian, I planned for my sister to be with me as soon as he came out so my husband could immediately go to Sick Kids with the baby.
The first time, my dad - God bless him - was the only around during my episiotomy…blah! I’m extremely close with my sister and she is able to make anything into a joke. Her support and help after the birth was comforting and put me in a positive headspace. I recommend having a family member or friend there to support BOTH parents. No matter how much you prepare yourself for this moment, you never know how you will react until you’re in it. And remember, no reaction is right or wrong. Be kind to yourself and don’t forget that this too shall pass…
3. Expect: Not to pack a transitional hospital bag. There is so much information out there on how to pack the “perfect” hospital bag. But this looks very different when having a sick baby.
What helped me get through it:
STOP following mommy blogs, magazines for mommies to be, etc. Most healthy pregnancy experiences are much different than what I experienced. By removing the comparison of what I thought having a baby would be like was extremely helpful for me.
Things you need to pack:
For both babies, I stayed at the Ronald McDonald House in Toronto. Sometimes you get in immediately and other times you need to wait - depending on the availability of the house. Both times, my husband and I packed a month’s supply of comfy clothing and personal care items that we left in the car.
Items for my baby:
The first time around, I was very upset as the hospital bag I had packed for my baby wasn’t helpful or useful. I couldn’t use anything I packed in the bag and I believe this further increased my disconnection with the baby. As well, not to discredit any of my amazing family or friends, but many generous gifts we were given to us in the hospital so they couldn’t be used. Instead of gifts bringing new parents joy, many gifts added to an already very stressful situation as we couldn’t use most items. The second time around, I thought very hard about what items I could use right away.
4. Baby’s first outfit
Unfortunately, I had a pretty negative experience with my eldest son, Theo, regarding his first outfit. To date, I have great relationships with many of the incredible nurses who cared for my boys. We often communicate over social media and I love staying connected with them. When you are in the hospital for such a long time, your nurses not only become your friends but feel like family. Like all situations in life, you’re not going to become friends and like everyone you meet and work with, so of course this was true with our nurses. Once Theo’s intestines were in his stomach, it didn’t occur to me to bring clothes to the hospital to dress him in. For two months prior, he was just in a diaper and wearing socks and a hat. Like many new moms, I had a special outfit picked out for him that I had hoped to dress him in it. I came to the hospital one morning and a nurse (one who I did not have a good relationship with) had dressed him in used hospital clothing. Her intentions were in the right place and honestly if another nurse dressed him, I probably wouldn’t have been so upset. However, when you’re already had issues conceiving, followed by a complex pregnancy and then a critically ill child, you feel you have been robbed of so much. This was something I was greatly looking forward to and I was devastated to see my baby dressed, not only by someone I did not like but on top of that, in used hospital clothes.
Something you CAN do:
The second time around I explained my past experience to a nurse I had a close relationship with. She validated my experience and suggested that I hang Christian’s outfit on the side of the crib. At the beginning, I didn’t want to do it as I was still really upset about my last experience. But hanging the outfit and seeing it there daily ended up being a positive thing for me. It gave me hope that Christian would soon be healthy, and I would be able to hold him in the near future. It also helped me feel like a mom and that I was somewhat in control of my situation. I highly recommend still bringing your baby’s first outfit along with the hanger and having it near the isolate (an isolate is like an incubator as it keeps the baby warm, but they’re not completely covered).
Items to have nearby:
5. Medical procedures that will probably happen:
As I mentioned in this section, Mount Sinai and Sick Kids work together and set up meetings with in hopes of preparing parents prior to having their sick baby. From going through my experience TWICE, the NICU is all I know. During this difficult time, transparence is key. I believe if I was prepared more with the ugly truth of what to really expect, perhaps the first time around, our experience may have been less traumatic. In my opinion, the best way to fight fear is with information. When reading through this list remember that most medical procedures that happen on your baby are completely terrifying. But if you are expecting them to take place, then they may be less overwhelming. I was prepared for the ugly reality of the NICU the second time around and procedures were far less daunting, as I expected them and knew they were part of the process.
How the heck does their intestines go back in? Once your beautiful babe comes out, a pediatric team will immediately start to care for your baby in a separate room. In my case, the room was attached to the delivery room. You will see your baby once they’re stable from the birth and the intestines are cleaned. When I saw my eldest, I remember thinking he looked like a mummy from ancient Egypt - his stomach was completely rapped up with white gauze. Your baby with also have an IV started and an NG tube, which will be explained later. Obviously, this is probably not the idea you had in mind when you found out you were expecting. To be honest, this part wasn’t as scary as I thought it would be. Everything was so surreal; I don’t know how, but I just went with the motions. [Note: to this day, I still struggle when seeing pictures of new mom’s holding their babies. I don’t think I will ever enjoy a Pampers commercial and I can feel my stomach turn when I hear positive labour stories. I am no longer angry about my story, but I think I will always be sad that I could not hold by baby for so long…and I’m learning that these feelings that have stuck with me are valid]Once your baby is safe to transfer, they will be taken to Sick Kids. Now their intestines will look different. Typically, the intestines are in a clear bag attached to a string, which is then attached to a C shaped bar that anchors overs your baby’s isolate. This allows for gravity to start making room for the intestines to descend into the stomach. Our eldest son’s case was very complicated, and his intestines were in bad shape when he was born. During his treatment, a surgical nurse showed me a picture of what his intestines looked like immediately after birth and it was grotesque! The intestines enter the body in 3 steps: 1) Gravity: as the baby is laying of its back, gravity encourages the intestines to naturally descend into the stomach. 2) Reductions: the surgical team would come by every couple of days and depending on how the baby is doing, they would slowly squeeze the bag or push down on the intestines. This is quick but can be painful and for this reason babies are given pain medication. 3) Surgery: Once the intestines are very close to the stomach wall, they will bring surgically stitched back together.
Pictures: In recent years, I only started sharing pictures of my babies’ condition. I used to be terrified of other people these pictures. I imagined them sharing them to their friends and family as if they were a learning exhibit. But now, I believe it is extremely important to show images of what this condition really could look like. Parents need to understand and prepare themselves for what to expect. For me, I saw a picture of a baby with their intestines in a bag at the high-risk clinic at Mount Sinai Hospital. Even though it was only one picture, and it was quite dated, I found it very helpful. Not only seeing the typical size of the baby (both boys were approximately 5.5 lbs) it was helpful for me to visualize what it looks like to have a baby with intestines outside their body. Even NOW posting these pictures I have NEVER shared until now, bring tears to my eyes....
Once your baby is born, they will immediately have an NG tube placed on the inside of their mouth or nose. Because their intestines are outside the body, the NG tube helps to remove all the bile/waste out. To this day it breaks my heart when I see a Sick Kids advertisement showing a baby with my NG tube. As I will talk about later, Theo, had a lot of problems with feeding and had an NG tube for some time. Christian, our second child, only had it for the first two months at the hospital and did awesome at feeding once it was removed. Once the tube is placed inside your little babe, rest assured that they usually are quite comfortable. Seeing the tube go in that can be quite distressing. Remember most kiddos will only have the tube for a short period of time.
A couple days after Theo was born, we were told they would need a PICC. A what???? It was explained to me that this is a long-term IV that helps the baby directly get the nutrients. Your baby will not eat until their intestines are inside their body and once they are inside, they will very slowly start to drink breastmilk through either a NG tube, breast and or bottle. There are two ways a baby can have a PICC placed inside them. It can be done by a specialized nurse in the NICU or alternatively, the baby can be taken down to IGT where a paediatric radiologist uses diagnostic imaging to guide the PICC into place. For either procedures, your baby will be sedated.
When we were first told that Theo would need a PICC we were completely terrified about the procedure and honestly, I thought he would die having it done. At the time, this procedure seemed extremely scary and daunting. However, once the PICC has been placed, it’s actually a great thing because it reduces the amount of times a baby is getting poked with an IV. With a PICC, doctors will have IV access and therefore need far less poking.
The second time around, it was not stressful as we were prepared for this step and knew it was part of the process. We also asked and advocated for Christian to get a PICC immediately to reduce IV poking.
Babies often need blood, especially before surgery to top up their hemoglobin as a precautionary measure. I’m not sure about you but, prior to this experience, when I heard “blood transfusion” I automatically thought someone was dying and they needed blood to live. I actually once said that to a nurse, and she laughed because it was such an inaccurate explanation of why babies need blood in the NICU.
As mentioned prior, Theo‘s recovery in the hospital was very rocky. The first week he was doing well, as his intestine slowly were placed back into his stomach but then the second week, he developed NIC and E.coli in his blood. Not only were his intestines extremely dilated but these infections were life-threatening. One day we got a call at around 3am that Theo needed blood. It was one of the scariest nights as we didn’t know what state he would be in when we got to the hospital. Seeing a very pale sick baby being pumped with blood is terrifying, even if it is only a precautionary measure.
A beautiful thing happened in our NICU room. As most people are aware, The Hospital for Sick Children is in the process of building a new hospital. The current NICU is extremely tight space. There is tape on the floor around your baby’s crib to indicate your space, so there is very little privacy between you and other families. That said, being in such close proximity to other people in the same situation as you can sometimes be a blessing. When Theo was hooked up with blood and quite critical, we started talking to the parents next to us. The mom said, “I know it’s scary to have blood hooked-up to your baby but honestly they do it all the time here.” She told me that her baby already had three transfusions. I remember looking at her like she was speaking another language but having her reassurance that this was part of the process was so comforting. Needless to say, it was an automatic friendship that we still have today.
Intubation is when a breathing tube is placed down your baby’s throat and into their lungs to help them breathe. I’m going to be brutally honest with you; this is something very hard to prepare for. Babies, particularly babies with Gastro, need to be intubated because as their intestines are slowly pressed into their stomach so this puts a lot of pressure on the lungs and makes it difficult to breathe. Also, since the intestines are slowly being pushed into the stomach, your baby will be on a higher dose of pain medication which sometimes makes the lungs “lazy” and impacts breathing. Theo was intubated and extubated several times, but Christian was fully intubated for six weeks.
The second time around, when Cristian was intubated, we were called and told it was going to happening. I anticipated this step in the process, but it was still hard to hear. Although Christian was in a much better situation then Theo, my husband started bawling when he heard the news. I can remember the call from in our nurse practitioner like it was yesterday. When your baby is intubated, they try to keep them as comfortable as possible but it’s still very hard to see. Despite this process being incredibly hard to deal with, I think it’s important to know that this is expected and needed in order for your baby to recover.
I would like to make a side note about intubation; as mentioned prior, we had some touch and go moments with Theo. There was a situation where he needed to be intubated rather quickly. At this time, my husband and I were given the option to stay in the room. I understand why the option is given to parents, however, after going through the distressful situation I truly believe parents should not be allowed to stay in the room. I have advocated this to the NICU and understand it is a divided issue. I strongly advise any parent to remove yourself from the room during this procedure. The nurses, RT’s and doctors are experts. They know what they’re doing. They know that baby will look distressed during this process and they know the perfect steps of securing the breathing tube in place. During this procedure, my husband and I were both crying, and I ran out of the room and threw up. Breathing tube insertion are not fun. Once they’re in though, they are somewhat manageable to deal with.
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