Category: The Blog

I feel a disclaimer is worthy for this post. I am sharing with you my story of the loss of my second born child. It may be difficult for some but I hope it can bring encouragement to any who need it! Its a bit long but heck its a life story so get comfy, and cry if you want! Big hugs my friends

Baby number 2 is on the way! So much excitement, as we began to prepare for life with a toddler and welcoming a new born. I was thrilled, Life was looking pretty darn good. I was building a family as I had always dreamed of.
Until the last month of the pregnancy it seemed like a normal pregnancy, the baby was moving Lots I was still working I was carrying on like everything was fine because we were under the impression everything was fine. At one of my appointments, the doctor was a bit concerned about the weight gain I was having. For my first pregnancy, I didn’t gain much weight had a very average belly however with Claudia my belly was huge and the ultrasound revealed some pretty devastating news. It showed there was excessive fluid in the womb and that indicated a problem with the baby. From what I remember this was a Thursday or Friday when we received this news. The doctor explained that at first Glimpse he thought Claudia showed signs of dwarfism. He sent us home and was going to book further tests next week to get confirmation on what was going on with the baby. I remember going home and just feeling overwhelmed I went online and started looking up information on dwarfism. Right away I realized this is not a huge issue, we’re going to have a sweet baby girl, we will love her for who she is, plain and simple, our baby girl is who she is and always will be!

Bring it on, we are ready for this next chapter. It seemed like forever until we could get back to the doctor for more follow-ups. When the day finally came, we were devastated. The doctor told us that it wasn’t simply dwarfism. Claudia had a rare form of dwarfism called Thanatophoric dwarfism, I had no idea what that meant. The doctor explained that it was a fatal type of dwarfism in which, simply put, her chest cavity was not large enough to allow her heart and her lungs to grow properly and as such she wouldn’t be able to breathe.

We were told if she was to make it through delivery she would die shortly after. My world that day changed I was only about 30 weeks at this point. Reality set in quite quickly, and the questions, why me, what did I do wrong, and the biggest one of, how am I going to find the strength to get thru this delivery.
The doctor discussed several options of what we could do unfortunately there was no real happy option. I don’t recall the fine details of the options but what I do recall is the fact that in Manitoba anyways, where was at the time if a baby was born under a certain age they would automatically be hooked up to life support. What the Frigg?? was my first thought, how friggen cruel can the policies be… We know my baby is not compatible with life outside the womb but yet they would put her on life support. Sure it would have given us more time with her, but then when would the decision be made to finally end her life. No friggen thank you, not a decision we would want to make. One hand I really thought and fought in my head that maybe life support option would be ok because it would give us time to find some miracle that would keep her alive.

We did much research and we talked with the doctors and it was clear that regardless of what we did Claudia was not going to survive outside my body. So in order to avoid her being hooked up to life support and us having to make another very very difficult, heart-wrenching and impossible to imagine decision for any parent. That decision of when do we turn off her life-support. Together we decided that we would wait until she was far enough along that she wouldn’t be hooked up to life support. Sadly, this decision meant that I would have to continue carrying the sweet baby bundle in my belly, feel her move, watch my belly grow some more and feel her each and every day, have my hopes and dreams for her play over and over in my mind, knowing the inevitable fate that would come to be when she was delivered and those hopes and dreams would never come to be.

At a time where most pregnant women are excited and looking forward to delivery, to having this bundle of joy out of their belly and in their arms, I was devastated. I was working part-time as a cashier at a grocery store up until this point and was hoping to remain working for a couple more weeks to help keep my mind occupied until such time as I could deliver. Deep down I knew nothing would keep Claudia’s fate off my mind, but maybe it would help mask the pain and stop the tears, at least for a bit. I remember looking down at my huge belly. A massive belly ball, well beyond a baby bump, that definitely looked like I was carrying triplets and thinking, HOW am I going to go out into public every day and face people knowing what I know. Knowing that once my sweet baby bundle is out of me she’s going to die. You can’t expect people to even begin to comprehend the complex emotions and the roller coaster ride of highs and lows as you feel this bundle inside of you, and then bounce back to the reality that all your dreams for her will never come true. This is where your true strength really plays into things, a strength that comes from somewhere, somewhere different for everyone I’m sure, but I want you to believe that you will have the strength. The path I chose that I felt was best for me and my health and to keep all the strength I would need for the upcoming weeks, I decided to stop working after a few shifts. I could no longer keep a smile on, answering everybody’s questions about this massive baby belly I was sporting, was requiring too much of my emotional strength. After all, I was still a mom to a bust active and ever loving 18mths old at the time. I hated going outside of the house, I hated having to talk to people, I hated having to see other pregnant women and anticipate that they were going to have a happy baby, they’re going to be holding the baby and they’re going to have a full life with their baby, I wasn’t going to have any of that. ON one hand I was so excited for the new chapter they all would be taking but on the other hand, I was deeply sad, maybe even jealous, so, I spent much of the remaining time of my pregnancy at home with my son. He was a distraction from the doom, he was a bundle of energy and made me smile throughout the days. He was the source of a lot of the strength, he as well as my family members and close friends who were there with a different kind of support Together they all helped our little family of 3 as we faced each day.
The doctor set May 21 as my induction date. We did all we could to prepare ourselves for the unknown. I remember getting to the hospital and seeing all these other pregnant moms of all ages, some seeming like they were still kids themselves. I remember being so angry. So angry that they were going to be able to enjoy their babies, that they were going to get to hold the baby and have a happy delivery. I struggle with this part a bit still today, I know I had no right to be angry but I was, I was full of so many emotions, I was angry, I was scared, I was sad, I was happy, yes indeed I was I was happy, We were finally going to get to see her, this precious little baby that made my belly grow so big, a sweet girl who I thought for sure was going to be a soccer Star one day because she would move and kick so much in my belly. Strangely I can still remember like it was yesterday feeling her moving and watching my huge belly move right with her. It brings a smile to my face now, that memory.

I had decided to go with an epidural for this pregnancy because I was pretty confident I was not going to have the energy to get through this delivery knowing full well that I may deliver a stillborn baby. I remember being in the hospital bed after the epidural was administered, waiting for the drip to start my contractions, waiting for my sweet baby girl Claudia to enter this world. I hated the feeling of the epidural I couldn’t feel my legs I couldn’t get out of bed I was tired I was lonely, even though my husband at the time was there, I just wanted to hold my baby. Looking back it seemed to be so much waiting but ye also seemed to go so quickly. So quick from the moment I remember entering the hospital to the day we left the hospital, no longer pregnant but no bundle of joy to wrap up and take home with us. Only pictures and memories. Some parts of the day I see and remember so vividly other Parts are just a blur. I remember the nurse is telling me it’s time to push in the doctor coming in and I remember hearing her cry when she was born. The moment came when I finally got to see my precious baby girl. She was beautiful she had a little button nose and she had short little arms and legs and she cried, it was such a sweet sound. I held her for a moment or two my parents had a brief opportunity to meet her. We spent about 30 minutes with her in total. I remember thinking and praying, to anyone at all who could possibly bring a miracle to let our baby fight the odds and keep breathing. That didn’t happen, Claudia was born at 143am and I seem to recall her last breath at around 215. I remember watching her dad hold her and keep waiting for another breath to come out. the doctor had explained that her breaths would become farther and further apart as she began to lose her battle.

She fought a good fight and she made me look at the world a little bit differently. Like I said earlier most memories are a bit of a blur, I just have little bits and pieces of memory after she was born and passed away. We had our time with her once she dies, we held her loved her, hugged her and after some time, we said goodbye to our little angel. the nurses took Claudia from us. now the reality of the next task that needed to be looked after. We had planning to do, we had to decide if we were going to have a funeral, we had to decide how to share our happy and then sad news, we knew we had to keep Claudia’s memory alive in our hearts.
What I also remember is the awkwardness in the hospital after she passed. This was back in 1997 and it appeared to me that the hospital wasn’t really that experienced in dealing with this type of situation. I remember first being placed on the newborn Ward with moms and their babies and I lost my mind. I recall being moved to a different surgical Ward and just basically being left alone. From what I remember I didn’t require much medical attention as the delivery went well I didn’t have any excessive bleeding as far as anybody was concerned the delivery was normal. What I really did need was emotional support from the nursing staff. I don’t recall that being a priority for them. I remember trying to be strong and trying to ensure everybody around me that I was okay and to try and not make things awkward. I’m not sure how long it was in the hospital for and what exactly happened with Claudia after she was born. I do have a vision and a scene in my head that haunts me still to this day and I question how humanely Claudia may have been treated after she passed. That vision is the hardest to look past and move on from still to this day. I don’t let it control my mind as it did for many years, somehow, I found the strength to put it away and knew that having it at the forefront of my mind does no good for anyone. It took a long time to realize that those memories can sometimes be put in the back of our mind. We know the memory is there, but by focusing on the present moment each day we can sometimes find ways to keep carrying one. You can too, one little step at a time each day, you can learn to lessen the control those daunting memories have on you.

There is no easy flow chart of what to do and how to do that, but each person needs to look deep inside themselves and find their way. Reach out to others, try different things, but whatever you do, do it with kindness and gentleness to yourself and above all be patient with yourself.

After Claudia passed, I remember being in the hospital, I remember friends sending flowers and sending Thinking of You and sympathy cards. Which were very supportive and caring and I am truly blessed for all those that helped get us thru that difficult time. I remember trying to stay happy and upbeat because my son was coming to visit and it just seems like it’s what I needed to do. I remember feeling angry sometimes when I looked at the sympathy and condolence cards because I felt like I was being rushed to get past the happiness part how to get past the pregnancy on the delivery and the fact that I had a daughter part. I know people meant no harm, I know that they meant well and they know that they cared but from moment to moment I flopped between feeling happy as I just had a baby and we just had our first daughter, It may seem odd, but I was happy about so much of the short time we had with her. I also understand that people don’t know how to react sometimes and maybe some other moms in my shoes wouldn’t have wanted to celebrate outwardly that the birth of their baby girl that passed away. So as much as I felt that I was rushed into The Grieving phase, which I must stress that I really don’t think I was actually being rushed by anyone, I was just hit with a whirlwind of emotions that changed from moment to moment. I will always cherish the many caring and compassionate and family and friends we had. I know didn’t understand the of emotions, because nobody can fully understand until you’ve been in those shoes BUT I do remember them being there. I do remember them sending their love and offering to help with my son and offering to help with things at home. we had an outpouring of support from our friends and family and. Still sticks with me this day.

We decided we were going to have Claudia cremated and she was going to be placed in the cemetery with my maternal nanny. We had a small ceremony with some close friends and family and then went home and life carried on. The smell of Lila I remember my aunt gave us a little lilac bush when Claudia was born and the smell of lilacs to the stay makes me smile and makes me think of her. Shortly after we delivered we were preparing our family to move from Winnipeg to Ontario. This was a welcome move as it let me escape all the things that made me sad about where we lived. It meant less chances of running into somebody who knew that I was pregnant and having to explain the situation basically it just meant I could run and hopefully have a fresh start where people didn’t know that I was pregnant and I wouldn’t have to try and platelets playing what happened and also try to comfort people when you tell them that your baby passed away. People don’t know how to react to that there’s no right or wrong way on how to reply to that type of news being shared. So as well as feeling happy that I could leave and have a fresh start it also kind of made me sad because what kind of recognition was I giving to the sweet precious baby girl of mine. For me, it was an awkward situation I didn’t want to not acknowledge that I had two children but after telling people that I have two children but one passed away I felt uncomfortable and I felt tired of having to comfort them when I shared my news. So, unfortunately, that meant that my baby girl didn’t get spoken of a lot and that makes me sad as a mom. Once we moved and we’re settled in our new place I was reaching out to meet new people and I went to the Family Resource Center. It turned out there was another family and moving to the area as well who had been through a very similar situation that baby didn’t have the same condition as Claudia, but he did have Trisomy 3 I believe is what it was called. We reached out to this couple and I spoke to them a few times. it was comforting 2 have somebody to talk to that had experienced similar pain. We didn’t keep in contact for very long however I’m not really sure why to this day. I really feel some people enter our lives for only a short time, for a specific reason, this may be the case here.

Once we were in Ontario I started doing some research into Thanataphoric dwarfism there wasn’t a lot of research at that time, remember this was back in 1997. As the years passed, from time to time and I would go back online and would research some more, it’s not a very common disorder, about 1 in 20000 to 50000 per year in the states, but as the years went on and as the internet began to grow I began to see other people from around the world who had similar situations. The more research I would do the more I would begin to question the decisions we made I would have what-ifs pop in my head all the time. What if we had a hooked up to life support what if there was something more we could have done. I had to stop myself from looking at this because the guilt I was feeling would just be overwhelming from time to time. I’m sure many can relate to that friggen emotion of quilt…but that’s what we need to work at understanding, guilt will come into our minds no doubt, but what we allow that emotion to do, what power we give that emotion over us, that’s what we need to work on, so we learn to control the guilt and not let it control so much of our mind.
interlude?
Once the world of Facebook came to be and the years passed on I did find some people from other places that did have children born with banana for dwarfism and they did survive the delivery and they are still living with the condition. This brought up mixed emotions for me I was happy for these people that got to spend more time with their children but I was sad that I didn’t fight more than I didn’t do things differently. I had problems with depression on and off for a few years and trying to keep my head focused and trying to keep the depression at Bay sometimes became a huge task with all the questioning and all the doubting and all the what-ifs that would pop in. It’s been 21 almost years my baby girl Claudia came and left this world. I still wonder today if things could have been different and I still wondered today why me why us why my baby girl. I’ve shared a few times on social media forums in closed groups with other moms that have been through similar situations and I’ve gained strength from reading and listening to other moms similar to me. If you have stuck with me during this long read, first off thank you from the bottom of my heart for allowing me to share Claudia’s life with you, to share my journey with you. By acknowledging my sweet baby girl and sharing my story, her story, it will hopefully give some strength to others who are going through similar situations. It’s never easy to go through the loss of a child nobody knows what to say nothing can ease the pain, with time. patience, love, and support you learn how to cope, you learn how to get through each day one day at a time. You learn your own ways to keep those memories as alive as you want.