Valentia’s Story

**This is part of the story of Valentia, Silas’ sister.  Valentia passed away at six weeks old of SMARD.  This telling is heart wrenching and raw and real–and I believe necessary.  In Valentia’s passing, she enabled Silas to be here with us.  She should be celebrated.**   

VALENTIA PRISCILLA AZELLE WERNER

September 23, 2008- October 23, 2008

 The following is an excerpt from a biography I began writing about the events surrounding Valentia’s death.  My husband, John, and I were told she died from SIDS, but I never believed SIDS took her life because unlike all the other babies who lost their lives to SIDS in our county (over a five (5) year period), Valentia had no risk factors. It was clear to me that she did not die from SIDS.  It was frustrating and I was outraged that nobody in the medical community would listen to me, and merely wrote me off as a grieving mother in denial. As such, I started my own investigation to try to uncover what may have taken her life.   Unfortunately we would not discover that she had SMARD until after Silas was born, but if I hadn’t done my own investigation into her death Silas would not be alive today.

 Only four pounds when she was born, it was important that Valentia begin gaining weight. The doctors and nurses told me that it was more imperative to feed her every three hours with a bottle than to spend too much time trying to get her to latch on in order to breast-feed her. I was upset for not being able to successfully breast feed Valentia, but John and I still felt blessed that she loved to eat and was growing. We, along with our parents, adoringly referred to her as our little “chow hound.” In fact, she was growing so well that the pediatrician said that she didn’t need to see Valentia until her two-month checkup.  Everyone who knew Valentia witnessed nothing but a healthy, growing, gorgeous baby.

 When she was born, Valentia looked very much like me with her round face and brown eyes. Her brown eyes changed steadily and soon she had John’s big alluring azure eyes, along with his perfectly shaped sweetheart mouth, his pale skin, and Aunt Laura’s (John’s sister) long, slim frame. She still had a round face and “the Porter nose,” as my dad proudly described it. The hair on top of Valentia’s head was still growing and looked like very fine peach fuzz close up, but from far away, it looked as if she had a receding hairline. It was adorable.

Still sitting on the bedroom floor, I felt the tears begin to swell in my eyes. I took a deep breath, closed my eyes, and quickly wiped away the tears before they hit my cheeks.  It was so painful to see the massage chair where I spent so much time feeding and loving and caressing my dear little Valentia. I felt as if I was going to vomit, so I directed my eyes toward the window and concentrated on the melancholy white sky streaming through the panes of glass and the sturdy old oak tree in the distance – the first thing I would cast my eyes upon as I awakened on all those pregnant mornings. I would gaze out the window, look at that tree with its spring buds and think how Valentia will be here with me the next time that those buds begin to blossom. It was here in this room where Valentia was conceived and where Valentia died. That’s when I realize that I’m sitting next to my side of the bed, the exact spot where my baby daughter’s short precious life suddenly ended.  Positioning myself on the spot where Valentia died, I pulled my knees in tightly to my chest trying to roll myself into a small ball in an attempt to simulate what it might have been like for Valentia when she lay there.   I thought about her taking her last breath that night, trying to imagine what she saw right before she closed her eyes for the final time. I wondered if I was too far away for her little eyes to see me in the darkened room. Then my thoughts faded back to the eve of our nightmare. 

Valentia was crying when I lay her down in her crisp white ruffled bassinet, almost as if she was trying to tell me something. I lifted her out and handed her to John while I made a fresh bottle, but John soon discovered that Valentia was “stinky,” so I immediately undressed her so that I could give her a bath. “That’s why you’re crying,” I said. “You’re a stinky little girl. Mama is going to give you a bath.”  Before I began bathing her, she was making soft-sounding snort noises through her nose, but it didn’t seriously concern me.  Weeks earlier, the pediatrician, as well as all my friends with babies, assured me that these noises were perfectly normal, but the noises stopped when Valentia was in the bath. We had recently turned on the furnace to cope with the cold bitter Pittsburgh weather, so I thought that the cause of Valentia’s muted snorts was all the extremely dry air from our forced-air gas furnace. I remember yelling to John in the next room: “She’s not making those noises anymore. I think it’s because of the steam from the water. I think it’s too dry in that room because of the furnace. Even [our little Yorkshire Terrier] Gigi was making hacking noises earlier today. It must be too dry in there and I think that’s why she was crying.”

I washed Valentia’s soft peach fuzz hairline, and she smiled as I rinsed the suds from her head. Her eyes looked particularly bright and blue that night, which is how I’ll always remember them. When her hair was wet, her sweet little head always seemed larger than her tiny 5 pound, 5 ounce body. “Valentia, I said teasingly.  “You are the cutest little alien baby. Mama loves you. You are beautiful. You look more like your Dada every day. You have his big beautiful blue eyes. I love you so much.”  I had Valentia’s bathing method well under control at this point, unlike the first week she was home, and it had quickly become my favorite activity. I wanted to savor the moment because I was afraid she would grow up too fast. She loved to feel the warm water splash on her body when I sprayed her with the hand-held hose from the Jacuzzi tub. She absolutely loved bath time.

The room seemed chilly. I think the temperature read 67 degrees. Valentia had only a few smaller undershirts upstairs, and I couldn’t find a clean one, so I dressed her in one of the cotton undershirt style onsie. John was peering over my shoulder to make sure he could undress Valentia for the next diaper change. He was just starting to learn the mechanics of crossover snappy undershirts. “Don’t worry about snapping the bottom,” I explained. “I’m just going to use this as an undershirt.” I lay Valentia down in her pink fleece jumper, the one with the ballet skipper feet that my mom had bought her, and noticed that her feet were cold. So I slipped some warm cotton socks on her feet before I snapped the jump suit. I grabbed the swaddle blanket from her dresser drawer and gently swaddled her, arms to her side.  Swaddling is supposed to comfort babies because it reminds them of their tight quarters in the uterus.  John used to call it a straight jacket. He had a point.

Trying to help her breathe better, I detached her Sweet Peace (an automated rocker that simulate rocking arms) from its base and set it down next to my side of the bed for her to sleep in.  This way she could still sleep on her back, reclined but not totally flat.  My friends with a babies told me that one trick to get a baby to sleep was to put them in their carrier. The Sweet Peace was shaped like a carrier, but more relined. “Should I actually get her carrier or do you think this is safe for night sleeping?” I asked John.  “When I bought it,” he reminded me,” the guy at Babyland said that his daughter used the Sweet Peace as a bassinet.” “Oh yeah,” I replied. “He told me the same thing.

So I set Valentia down gently in the Sweet Peace, making sure that her little head was in the head positioner so she didn’t slouch over while John plugged in the vaporizer to add moisture to the air.  But Valentia continued to cry so I gave her a pacifier. She didn’t seem to want it though. This was unusual because she loved that pacifier so much that John joked that she looked like the baby from the Simpson’s who always had a pacifier stuck in her mouth.  Nonetheless, I figured she’d start sucking away as soon as she clamed down. I tucked the bottom part of the pacifier in her little fleece swaddle so that it wouldn’t fall out, a trick I used to hold it in place when I drove with Valentia over to my mom’s house 45 minutes away. I also wanted to ensure it wouldn’t fall out because I had read that pacifiers reduced the risk of SIDS (Sudden Infant Death Syndrome) by 70%, something to do with the sucking motion and brain stimulation. Just that week, I also learned that ceiling fans were significant SIDS risk reducers because they decrease the chance that babies will re-breathe their own carbon dioxide. I didn’t know much about SIDS at that point. I thought it was caused by suffocation and that, for some reason, boys, African American babies, and babies with teenage mothers were more at risk.  So even though I had little fear that Valentia was at risk, I turned on the ceiling fan too, just to be extra careful, especially after two different friends who had stopped by that week happened to bring up the subject of SIDS and ceiling fans during the course of their visit.

Valentia was still crying. “Awe, Valentia. Don’t cry. Mama is here. Mama is right here. I can see you and I’m right here.”  Those were the last words I spoke to her before she drifted off to sleep. My voice was the last thing she heard before she took her last breath. I sometimes hear myself repeating those words out loud: “Mama can see you. Mama is right here.” Then instantly I feel a hot wave of anxiety course through my body.  Recriminating thoughts begin to flood through my mind:

 MAMA DIDN’T SEE THAT YOU STOPPED BREATHING.

MAMA WAS RIGHT HERE NEXT TO YOU

   BUT DIDN’T KNOW WHAT YOU NEEDED.

MAMA FAILED YOU. MAMA FED YOU IN THIS ROOM.

             MAMA LOVED YOU IN THIS ROOM,

BUT MAMA LET YOU DIE IN THIS ROOM.

 I had just given birth six weeks ago and now my baby was dead! Buried in the ground.  I didn’t want to think or talk about anything else.  Nothing else was worthy of my thoughts, and my thoughts were all I had.  I wanted to savor every last one.  I wanted to climb up on top of every rooftop and scream into a bullhorn:

 My baby was alive. She was a person. She lived.  She had a birth certificate,

She had a social security card. She had an insurance card. SHE MATTERED!

 She was here.  She smiled. She cried. She liked listening to her Dada read her

 Green Eggs and Ham. She hated getting undressed but loved getting a bath.

 She was her own little person with her own personality, but now she’s dead.

 My baby is dead! I wanted to scream to every stranger I passed on the street:

    VALENTIA DIED AND NOBODY KNOWS WHY!

 I wanted someone from television to do a story about her on “Unsolved Mysteries.” I wanted the entire world to know about Valentia. Refocusing my thoughts on seeing Valentia again, I figured that the closest I could ever get to being with her is through her brother or sister. So I imagined what it would be like if someday we have another child.  Will he or she look like her? And if we have another baby, will we be able to live in this house? The house where Valentia died?  I think about the hundreds of joyful mornings that took place in this house before the single horrifying day that Valentia died and wonder if I can stay here in this handsome old house…our beloved home.

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14 Comments

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14 responses to “Valentia’s Story

  1. WOW…what a heart brakeing sad story.beautifully wrote.
    you are a wonderful mother.
    Silas is lucky to have such great parents and such a beautiful big sister Valentia looking over him.
    fly free beautiful baby girl.
    all our love lidia and maddison..xxxx

  2. SHE IS BEAUTIFUL! Thank you for sharing her story! She deserves to have her story told! I cannot imagine what you went through, or what you still go through. You guys are so strong. And I feel like all the work you have done trying to further smard research is in turn helping Valentia and other babies like her…Thank you. Was she born so small because of growth restriction in the womb then? I am pregnant now-and i fear that when we get our next ultrasound they will tell us our baby is too small. Presley was not, but our doctor told us with smard it is common to have them smaller in the womb and not kick as much. Do you mind me asking? I feel like other parents know more sometimes than i could get from a doctor?
    Thank you again for sharing her story. She looks so perfect in her pictures!

    • Lisa

      Hi Mindy~

      Thank you, I truly appreciate your positive response. I know our story is sad and the tone of the blog is up-beat, but I couldn’t write Silas’ story until Valentia’s story was told since it is essential to his life. I also hope if someone finds themselves in my shoes and their baby dies from SIDS with no risk factors that they will be lucky to stumble across my story and discover SMARD before they have another child.

      Yes, Valentia was small because she had a inter-uterine growth restriction. I was induced at 37 weeks because the doctors discovered that she was not growing properly and they feared that she was not getting enough nutrition from the placenta. I had a first trimester screen (with her) which showed that she had a low PAP-A level (its a pregnancy hormone of some sort). The low PAP-A made her high risk for Downs & Trisomy 13 (I believe- or 18), so I had a CVS which showed that she had NONE of those issues. After they discovered how small she was, the doctors concluded the PAP-A was low because she was tiny/growth restricted, but they had NO IDEA why. I made them check me for every clotting disorder under the sun, but there was nothing wrong with me. They said I just might be someone who as small babies, but we wouldn’t know until I had another baby.

      Once I was pregnant with Silas the doctors watched me like a hawk to be sure he wasn’t growth restricted. I had weekly growth ultra sounds and the doctors concluded that he would be over 6lbs when he was born, but when he came out and they said he was 4lbs 11 ounces. I knew in my heart that something was wrong and that Silas had whatever Valentia had. Still on the operating table (unlike Valentia he was a c-section) and I sobbed my eyes out because I was scared to death that something was going to happen to him too.

      The doctors can test for SMARD in an CVS or an amnio, but I think only to a certain time period. Did they talk to you about that?

      • Ya they did talk to us about the amnio. I was almost 13 weeks when we found out Presley’s diagnosis of smard and I knew in my heart I did not want to abort the baby no matter what. So i kind of felt at the time an amnio telling me she was smard would only break my heart even more and make the pregnancy harder. I guess i felt i would prepare myself for whatever was to come. Now I kind of wish I had done the amnio…..but part of me is still glad cause i can get a glimmer of hope every once in a while that she is healthy. I know, sounds messed up. It’s such a tough position to be in. And then they told us with amnios you have a chance of miscarraige and I was an emotional wreck at the time of diagnosis and when we were presented with all our options and I just did not want to make any decisions. I knew I was keeping my baby girl either way , I really felt she was meant to be in our family because of how I came to be pregnant-timing and the surprise of it all. And I just am preparing for smard but also trying to have hope for a healthy girl. 🙂 I am getting my tubes tied after she is born-so no more surprise babies 🙂 although i am grateful for her no matter what. And if she is healthy we will try for invetro with gene selection in the future. If she is not healthy, we will raise our two little princesses and love them the same and though life will be different than we wanted and expected…It is so much fuller with Presley in our life and we wont love our next any less. (her name is Charlotte).
        I am so happy you shared her story-this blog is to help EVERYONE affected by smard. And those who lose their children in any way shape or form need to have their angels stories told too. If I would not have heard your story or heard that smard can be misdiagnosed as sids I would have no idea i needed to be so careful when charlotte is born. There is just not a lot out there to inform us, we need each others experiences and advice. I am hoping that because her gene tests will take 3-4 weeks to get back that they will put Charlotte on Sat monitors when she sleeps but again i dont know what they do? I am sure thats something i can fight for if not. But because Presley was diagnosed and her diaphram went at such a later age i would not have thought of that for the next one without hearing your story and other parents telling me these things. So thank you and I cant wait to hear Silas’ story as well! Both of your children are so precious and beautiful!

    • Mindy,
      My Evan was also small when he was born. The doctors had no idea that he was going to be that small because he was full term. I have since had 2 healthy kids and the doctors did level 2 ultrasounds during both of those pregnancies to check for size and movement (Evan didn’t move much in utero).
      Hope things go well in your pregnancy!
      Erika

      • Erika, Thank you for the response! So did you know he was moving less and were concerned or was it something you thought of after he was born? How small was Evan when he was born?
        It gives me hope to hear you had 2 healthy kids since! I know I could be different but I am soooo happy to hear when others have healthy kids before or after! Presley was a major kicker in utero and so I never thought ever there would be something wrong for that reason. I always knew she was a spunky girl cause of how active she was. This one is pretty much the same, but it does not tell me anything cause Pres was so active too! This one maybe maybe moves softer-not so much like hard punches that hurt-but its a lot (if that makes sense?) But I dont know if i am remembering Pres at the end or what? I know, with how much i analyze it I should have really done the amnio-but i really felt i shouldn’t for some reason. Which is dumb cause I know lots of people who do and they are so glad they did! Sometimes you just have to listen to your gut though. Thank you again for the response!

  3. Lauren O'Donnell

    Lisa,
    What a beautiful little girl. I love the picture with Luca (puppy).
    You are very fortunate with Silas. Without him , you would have never truly known what happened to Valentia. I hope this gives you some peace of mind of knowing why it happened. He is a true messenger sent to you and my little angel. He makes me smile everyday I am with him.

    Lisa, just think of all of all the people you will be supporting by writing this comment. For all those who have lost children to SIDS and do not know the complete truth. Maybe their children too had SMARD and they just didn’t know it. You are a strong woman that I look up to. You have inspired me to let the little things go and look beyond to what really matters in life. I am grateful for you, John and Silas.

    P.S. I know that when Silas laughs at the deserted corner of the room some little angel is making him smile () 🙂

  4. Mindy,
    I didn’t know any different with Evan. He was my first baby and I didn’t know what to expect as far as movement. It was only after being pregnant with my second that I realized how little Evan moved. When Evan was born he weighed 5lbs 14 oz. and was just a week away from his due date. He had a tiny little cry and slept a lot, but no one seemed concerned. I know we would have lost him as a baby too, but he started refusing to eat before his breathing went downhill. So as we were getting things checked out for that, they found his diaphragm issue and hospitalized him immediately. By the time he had surgery 3 days later he was really struggling to catch his breath.

    About the amnio, I decided not to have that done with either of my other 2 kids. When I was pregnant with Andy (my 5 year old) I’m not sure there was even that option because SMARD was so unknown. I also would not have considered abortion and I guess I felt like God was just saying, “Trust me – either way, I’m in control and have a plan for this child’s life” I have written our story and so it should be posted soon!

    When is Charlotte due? Looking forward to hearing more from you!

    Erika

    • Lisa

      Hi Again, Mindy~

      I totally understand why you didn’t want to do the amnio, it makes perfect sense to me. Do you know which lab is processing Charlotte’s SMARD test after she is born? Did you call there to see if you can rush that? If not you may want to try to find a lab that’s able return your results faster because if she does have SMARD that is something you need to know ASAP (for her safety).

      I’m sure you know this, and I don’t intend to scare you, but SMARD can manifest quicker than 3 weeks. Silas stopped breathing when he was 2 weeks old and if he would have been home at the time he would not be alive today. It was a miracle that we were at a sleep study when he had his cyanotic episode, and we had him on an apnea monitor at home (which was useless), because at the time I feared Valentia died from an undiagnosed apnea and I wanted to be sure Silas didn’t have an apnea. In hindsight, we should have used a pulse-ox monitor, but I have no idea what we would have done if he started to de-saturate at home?! Its not like we could have intibated him at home. Did the doctors prepare you to respond to this kind of home emergency?

      This is why I’m asking if you talked to the lab that will be processing Charlotte’s blood because you don’t have time to waste. I would not leave the hospital unless I had those results in my hand. Maybe if you tell the OB or the insurance company that Charlotte will not leave the hospital without results, or that you want them to sign a release saying they will be liable if something occurs at home, it will light a fire under their butts and they will do whatever to get those results or let her stay in the hospital longer. RGI (Reproductive Genetics Institute) in Chicago can process the results, they told me it would take 2 weeks for a CVS, so I’m guessing the blood test would be about the same, and there is also Prevention in Marshfield, Wisconsin. Maybe give them both a call and see how quickly they can process it, or send samples to all to see who gets it back quicker.
      The problem with going to Prevention or RGI is that they need to have yours and your husband’s blood so they can map out your genes first (or whatever its called) in order find any defect in Charlotte’s genes, but you have time to do that (I think).

      RE: the kicking in utero, I don’t feel that Valentia or Silas kicked much, so I don’t have a good frame of reference, but there were many days when I thought both babies stopped kicking and I rushed into the OB’s office for a non-stress test. The tests always showed both babies were fine and the doctors always gave some explanation as to why I didn’t feel them kick (the placenta was a posterior or something like that), but I think now that they just didn’t move very well. I always left the doctor’s office feeling paranoid and a bit crazy, but I guess I really wasn’t. I would give anything to not have been right and to just have been crazy/paranoid. 😦

      • Lisa

        PS~ Realistically I know its impossible to stay in the hospital, but its worth a shot, however, I would demand that Charlotte have a fluoroscopy of her diaphragm before she leaves the hospital. This way they can at the very least tell how well her diaphragm is moving–and if it is not moving very well then they will have reason to keep her for observation. If you take her home shortly after she is born then I would insist that she go to the hospital for a fluoroscopy every couple of days because you need to keep a close eye on her diaphragm while you’re waiting for those blood results.

        AND she will need to monitored 24/7, not just when she is asleep. Silas had his attack when he was wide awake and so was Valentia.

        A “Fluoroscopy is an imaging technique commonly used by physicians to obtain real-time moving images of the internal structures of a patient through the use of a fluoroscope. In its simplest form, a fluoroscope consists of an X-ray source and fluorescent screen between which a patient is placed. However, modern fluoroscopes couple the screen to an X-ray image intensifier and CCD video camera allowing the images to be recorded and played on a monitor.”

      • LISA,
        Oh my gosh, see this is why it is so good i have you guys! No we have not been prepared in any sort of way of what to do if Charlotte stops breathing, except what we know with trachs-which wont do us any good with her-we are clueless. We are 5 minutes from a pretty good hospital but they would most likely life flight her to primary childrens. I think our doctors are so used to sma 1 which manifests the breathing stuff later than our smard kids normally do……I am going to get on the ball and make some phone calls tomorrow. The biggest problem is that if something happens I CANNOT LEAVE Presley at home or even pack her up myself. So it would be a nighmare. I do have help though the first 4 weeks after she is born, i wont be alone with them is the plan so thats some reassurance. I had no idea we had options on gene testing places. We got presleys and mike and i’s done at “GeneDX” the logo is a zebra or something. I am going to call them and ask that they rush it. They already have Mike and I’s samples so it should not be a big deal anyways. Thank you, I will probably be contacting you more to see what you think when i find out what i do! You are amazing, and thank you for telling me all this, i would have not even thought of it-given our situation with Presley was so different. If you ever think of anything else i should think of please let me know! Obviously im a nervous wreck and have pregnant brain so i need all the help i can get! 🙂

    • Charlotte is due April Fools (is that a bad sign?) 🙂 But we are inducing her a week early because i have to have nurses scheduled to care for Presley. I hope induction is okay? Everyone seems to think it is fine. I just cant run off to the hospital if my water breaks! YIKES! Yes that is how i felt as well, and still do, that God is saying to Trust Him and I know she will be precious and loved no matter what.
      And I am so scared that if I knew Presley was smard i probably would have been too nervous to ever get prego again. I kinda feel blessed it happened the way it did and was given the chance to be pregnant again. 🙂 I cant wait to hear your story! Talk to ya soon!

      • Lisa

        Mindy,

        I’m very happy to help, and I totally agree that the doctors don’t know what they’re dealing with if they’re only used to seeing children with SMA. Good, I’m glad you have some time to put a plan in place and that you are 5 minutes away from a good hospital. I never even thought about you not being able to leave Pres in case you had to rush out to the ER, so you need to leave time to call 911 and for the EMS to get to your house. As such, you should DEFINITELY find a medical professional to teach you and your husband or other family members (hands on) what you need to do at home if Charlotte stops breathing and luckily you already have the ambu bag and mask at home, right? I THINK (PLEASE CHECK WITH YOUR PULMONOGIST) you would put the mask over her face and then attach the bag to the mask & bag her with a few liters of O2. You will need an infant size mask so that it will fit over her nose and mask and create a tight suction because you don’t want air to escape because you need good chest rise.

        The no. for RGI is 773.472.4900, I would ask to speak to a genetic counselor. We deal with Anna, and she seems pretty knowledgeable.
        I’m guessing they’ll tell you they can run the tests in a few weeks, but since their work is considered a “study” and not “clinical” that they technically can’t advise you what to do based on their findings, but it doesn’t change the accuracy of the testing. This is what they told me about the CVS test when I inquired about how quickly they could get results back for a possible future pregnancy.

        Prevention Genetics No. is: 715.387.0484. Web site is: http://www.preventiongenetics.com

        Considering that Presley’s respiratory failure occurred so much later on than most children with SMARD, I think IF Charlotte does have SMARD (75% chance that she DOES NOT HAVE IT) that her symptoms would manifest in a more slow-paced manner, unlike Valentia and Silas. However, its better to play it on the safe side and use all the knowledge to put a plan in place. Silas’ symptoms manifested 3.5 weeks earlier than Valentia’s symptoms, so again, it is better to be safe.

        Let me know if I can help with anything else~ 🙂

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