Shannen

Mom to Asjiah-Fate

September 18, 2012 – October 8, 2012

Toronto, Ontario, Canada

It all started when I was 7months pregnant. I had my 18 week ultrasound done over and over. They kept repeating it, saying they just were not getting clear pictures of baby’s heart. Then I was told I had to go to Mount Sinai hospital to have it done, just because they had better equipment. I was so confused about what was going on. I had 3 previous miscarriages back to back prior to this pregnancy, so was very worried. I asked, “Are you sure that is the only reason, because I’m going to be going alone?” They told me everything was fine.

I finally got my appointment and went there alone. I went into the ultrasound room, and the nurse was asking me a lot of questions, and then when I laid down she started to ask if I was alone. I said yes. She started to tell me I should call someone. I questioned why, and she said because the reason I was there was because the baby had a rare condition called Diaphragmatic hernia. I didn’t know what to say or do. I got up and said I need a break after I was there for 2 hours of getting ultrasound. I went downstairs and called my mom to get here quick from Barrie. I went back up and finished the other 2 hours of ultrasound, and then had a doctor come in and take more pictures. Then they said they needed me to meet a team. So, my mom and sister got there finally and we went into a room where there were doctors everywhere from Sick Kids and Mount Sinai to explain what was going to happen. They started to explain that her heart was on the wrong side, blocking her lungs, her liver and bowel were pushed up into her chest and there was a hole in her diaphragm. They told me there was nothing I could have done to cause or prevent it; it’s like 1 out 5000 odds and I happened to be the one .She had a 60% chance of survival and when I had her it would need to be planed, so I’d be in Toronto for sure, because she would have no chance at any other hospital. They also made it very clear that when she was born, she would be rushed away from me without me holding her or anything; it was for the best to try to keep her alive. Then, when they got her good and stable, she would go through surgery to place her organs to where they should be, in their original places.

I was so overwhelmed. I came home and read and read on her disorder, trying to find out more information on it. I didn’t understand. I was always told my baby was so active and her heart was very strong. I had so many ultrasounds throughout my pregnancy and NO ONE told me this before I was 7months pregnant.

So, I went on with my pregnancy having hope. All my doctors then changed to Toronto, and I was coming to appointments all the time in Toronto. Then we added on two more doctors from Barrie as I got bad diabetes through the pregnancy and had to start insulin as well. I was due September 30, 2012. They gave me an induction date of September 17, 2012 that would make me 38 weeks 1day.

I was ready September 17th. I went into hospital early that morning to Mount Sinai and was induced, and later that night the doctor came in said he was going to try keep me from having the baby until later next day, because my team at Sick Kids wasn’t ready for her. He would rather it be on a day shift when more higher up docs were there. So at 3am, doctor comes in to break my water and then it begins; I was finally taken to the O.R and had my little girl, Asjiah-Fate on September 18th at 6.31pm, weighing 6.6 lbs. She let out a little cry, which they said she wouldn’t do, because she really only had one lung, but she was always surprising them.

They rushed her into the room next to me, trying get her ready to go to Sick Kids, but she just wasn’t stable enough. I just wanted to see her. I had my mom waiting in the waiting room, as I was not allowed anyone in the room with me for delivery. So, they came and took me to recovery and my mom came there, and then they came and said they were going to let me look at her quickly because they were just waiting for her to become stable before they transported her to Sick Kids across the street. My mom came with me. She was beautiful; she had hoses hooked to her but she was so pretty and perfect. I sat there holding her hand, just looking at her. They then took me to my room and took Asjiah to Sick Kids. They called me later that night to tell me they got her to Sick Kids and were still trying to keep her stable.

The next day I was alone and just wanted to go see my baby. I signed myself out of hospital; I had few problems during the time I had her and had a lot of stitches and had her through natural birth, so hospital didn’t really want me to leave, but I was leaving anyway. I walked over to hospital across the street, which felt like the longest walk ever. I went up to the second floor PICU and saw my little girl, where the door read Bailey Girl Baby. They didn’t even have her name. No one asked me her name. So first thing I said to nurse was, “She has a name, can you please put it on the door?”

I sat there as I held her hand. She was so perfect; she had so many machines, but I looked past all that.

Days went by and I decided I was going to drive to Barrie, where I live, to get some stuff and come back .Then I got a call when I was in Barrie. They said she was not doing well, she needed a blood transfusion and they needed me there. I said, “I’m on my way…give her the transfusion, don’t wait for me to get there before you do it.”

I arrived to hospital and as I was walking up, I got call from the doctor telling me to hurry, that Asjiah had had a cardiac arrest and they actually were pumping her chest. The doctor took my sister and me into a family room and sat us down and told us she wasn’t well, she wasn’t going to make it on her own. My eyes filled with tears. I said, “Please save my little girl. She is all I have and I need her.” She then mentioned a machine called “ECMO”; it’s very risky. It is two big hoses going into her neck vessels, one running to heart and the other to her lung, and it would do all the work for her to give her body a break. It circulates her blood. But a risk was that it could cause blood clots. I said, “Do it. There is no other choice,” so they went and took 2 hours roughly to do it. I went in and saw her and as soon as I saw the machine, I cried so hard I had to leave the room. I always heard nurses tell me that Asjiah was such a fighter and had been giving them a run for their money lots of times. I then called Ronald McDonald house to stay there, because there was no way I was leaving Toronto again until I had my baby with me. She was on so much medication since birth to keep her fully sedated and free from any pain or anything. I was so scared of this one machine, but it was keeping her alive. She was on 7 machines total, but this one particular machine scared me so much. She couldn’t have anyone visiting her, I kept it to very few people. Even when she was ok for the day, it could change so quickly, and go from an amazing day to cardiac arrest. So, just to keep her from catching any infections, I needed to keep her from everyone for her heath. I did try to get some family in when she was having an ok day, but know one liked or wanted to see her on the machines.

The doctors told me she got a blood infection and they think that’s what caused her to have the cardiac arrest. They did tests and found out she had e-coli as well. She was just getting all this stuff, making it so much more difficult. We needed to get her in for surgery, but she just wasn’t strong enough; she was on too many machines. So, days went by and I had my cousin come up and see her a few times, and my mom. My sister was staying with me at the Ronald McDonald house for a little while, helping me cope with things. I had my little brother meet Asjiah once as well. It was very hard for me to get anyone in to see her with her heath changing so much. I spent day and night at the hospital, walking back and forth all hours of the night. I wasn’t eating or sleeping, just wondering daily what could go wrong next. 

They then said they needed her to come off ECMO; it had been too long and they wanted her off before they ran into problems. I was so scared because once they took her off, if she didn’t do well and had another cardiac arrest, she couldn’t go back on it, and that’s it. She wouldn’t make it through another cardiac arrest. I left for 2 hours as they took her off. The doctor called, saying she took well to it. So that night I decided to get Asjiah baptized, I didn’t believe from all the hurt I had from previous miscarriages, but I wanted Asjiah to be able to make her own decisions, so I got her baptized in her bed that night. I had her prayed over all the time. I thought I’d give it another shot and try to believe for my daughter.   Every day I went back to Ronald McDonald house to sleep or try to sleep. I was so scared every time my phone rang, thinking something had gone wrong. I would get calls in the middle of night, in the early morning, making me run to hospital to get there. I was not healed from having her, so I was in so much pain, but didn’t think of that at all. I thought my baby was going through way worse, so what I was going through was nothing compared to her. With my ankles so bad I could hardly walk, I just kept running on them.

Then I got a call at 8:30 am that Asjiah had had another cardiac arrest and was gone for 7 minutes, and they brought her back. Then again for 4 minutes and she kept coming back. She was such a fighter and they said she wasn’t going to make it! They took me into a room where all these doctors were surrounding her, manually pumping air to her lungs, and I stood over her crying, so scared as I looked at her blue .This was the worst thing I have ever seen. Then they said, “We think you should finally hold your baby,” and I almost did and something stopped me.  I said, “NO! I’m not letting this be the first time I hold my baby.” They got her back stable and I asked the nurse, “So, how would I have held her with all the machines?” She said, “We really thought that she was not going to make it that day.” I said, “So, you were just going to take her off the machines?” She said, “Yes, we thought that was it.” So basically, they were giving up on my daughter when she was still fighting for her life. I was so angry.

Days went on again and at this point I felt like they just had no hope in my baby girl, and I had asked for core nursing so that I would have same nurses working with Asjiah, because Asjiah had such an attitude with new people. She may not have been awake, but you could see it in her numbers on machines that she was so angry. I questioned everything they did at this point. I needed to know what was going on step by step. I asked doctors daily were they giving up on her, and they said no. Every time I’d go in to see her and she had a new nurse, it seemed like that is when she had really bad days, because they do not know Asjiah like other nurses did.

On October 8th, I got to hospital at 4am. The new nurse said Asjiah was not doing well; her numbers showed good, but her blood work didn’t…her organs were failing. I called my mother in Barrie right away and said get here. The doctor came in and said she wasn’t well, so they wanted to get baby in her mommy’s arms today. The nurse finally did some foot prints that I had asked to do for weeks, but Asjiahs heath was just too bad at that time, so they decided we would do it on this day. I then knew it wasn’t good. My mom and sister arrived there just in time; they were unhooking some of her machines and put her on the machine that they said she wouldn’t do well on, that she needed to be on for her surgery. She was finally in my arms after 3 weeks and I finally held her. I cried and cried. My sister on one side, mother on the other, watching over me as I held her .Then I heard a doctor say, “Let’s get some of these out of your way so you can hold her up like a mom should.” As they cut cords off her I knew she was then gone. My baby, my life, my everything…she was gone!! .My first time holding her had just turned into my last time holding her. My heart was so broken. Why me? Why her? She was fighting…what happened?? I left the room after seeing my baby for the last time, so confused and feeling lost, filled with so much anger and hate.

On our way home, my sister and mom told me the doctor and nurses were turning her machines down slowly until it reached off. My mom and sister thought I knew and it was part of the plan, I didn’t know this was going to happen. I thought she would pass on her own, not with the help of them. I was so angry. I called the doctor, but he said I was prolonging death if I kept her on it. I’m so glad my mom and sister were there for this, and they arranged her funeral as I couldn’t. I had so much help from my cousin as well, who was also Asjiah’s God mommy.

I went from holding my daughter for the first and last time to having to pick out her first outfit and music for her funeral. I held her through all of her funeral service and they had her in her bouncy chair through her viewing. I did not want a coffin and didn’t want her lying down; she had lain down long enough. I knew I was having her cremated, but I needed people to see my baby; I needed to show her off. I didn’t ever expect it to be at her funeral, but that was my only choice. I also had a non-profit organization come in to do private photos of Asjiah on my lap and her dad beside me. They made the pictures look like she was just sleeping. I felt I needed these photos, since all I had was pictures from the hospital with hoses. I needed this for me.

Every day is harder and harder. I miss her so much and I have so much hate toward so many people. I will never understand why one person has to go through so much pain. Then you get people who start avoiding you or make comments like “she’s with the angels”, “she’s in a better place”, “she isn’t suffering”…all these comments you don’t want to hear, all the comments that just anger you more.

Now I have to try to take it one day at a time, except that it’s not a bad dream. She really is gone.

You can contact Shannen at s_hilditch@hotmail.ca.

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Comments

  1. Shannen, I am so sorry for your loss. I cannot imagine your pain. I have said a prayer for you that you would find comfort and peace, and that you would hold your daughter in heaven one day.

  2. shannen says:

    Thank you

    • Tami says:

      Shannen,

      I can’t even try to imagine your pain and sorrow. I am truly touched by the way you handled your baby girls funeral. I think it is remarkable that you held her with pride and love on her last earthly day. What a wonderful mom to have placed her next to your heart on that memorial day for her. I applaud you for your strength and courage to fight so hard for her. And what a lovely name you chose for your baby. I will continually pray for her and your heart to make room for God to comfort you. No one can say words or do anything to help ease your pain. But I know your baby girl is smiling knowing she felt her mommy’s love and arms around her. Take care!!!

  3. Teri Nunn says:

    I know words aren’t really a comfort, but I am so sorry for your loss. My heart broke as I read your story, no mother should go through this, mommas weren’t meant to outlive their children. I too lost a baby, a son, to CDH. It’s been almost 10 months, but feels like it was just yesterday. Going day to day is all you can do. Thinking of you….

  4. Our stories are so different and I can’t say I know how you feel. I just want to say I’m so sorry this happened to you. I hope you find peace.

  5. Jennifer says:

    I love you, through reading your story. Mine is very similar. you are beautiful and strong. maybe we can be of support to one another?

  6. elle says:

    Absolute horror, tradegy, anguish, trauma. Why are we forced to live with this pain???!!!

    Words can never come close.

    You are a survivor.

    My baby died stillborn. The other was in NICU at sinai for 4 weeks. I saw the hell the moms are living there, and the hell at sick kids.

    No one talks about it. Now I know many of us are walking aroundn with major wounds in our hearts. A mothers love is beyond words.

    Now we are forced to try to live with this pain, anguish, sorrow…with the flashbacks to our traumas….with the questions and the what ifs….the anger, helplessness, guilt and frustration. It is a heavy burden and an bleak road.

    i know my baby wouldnt want me to live miserably now, even though that is how i feel and I cant imagine being happy again. I am trying to seek counselling and support to work through my traumatic memories.

    Prayers and wishes from others mean nothing to me. But knowing that you and other strong women like you have been through this hell and are going day by day helps.

    Life definitely is not fair. It is cruel. It does not make sense.

    I know now that many of us can and do live with this new understanding….until we can meet our babies once again.

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