Sebanna's Story - By Lucy DeMille
I, like most people had hopes, dreams, and plans for life but from the time I was little all that I ever REALLY wanted to do was be a mother. I felt it was my life’s calling. So it was no surprise to anyone when as a child I was always looking out for and nurturing others or that I could always be found gladly taking care of children. I dreamt of the day when I would have my own.
As I entered my first pregnancy, I was an excited, healthy, 17 year old wife and mother to two step children (whom I later adopted) I had great hope for my future of mothering and a naivety which would be shattered after suffering the devastating loss of my first child Sebastian due to Preeclampsia.
So when I became pregnant again with a little girl we would name Sebanna, I shed many fear induced tears, and stayed ever vigilant, but remained determined and held on to hope, especially as I watched her grow stronger through the many ultrasounds that were provided to ensure she arrived safely given my history with Sebastian.
Frequent monitoring and checkups were a common aspect of my pregnancy with Sebanna and as a result of the monitoring was my eventual hosplization on bed rest for nearly a month at the end of my pregnancy, which while exceedingly difficult, did nothing to derail my commitment to bring my baby girl in to this world safely.
All the efforts paid off and our hope was exceedingly rewarded beyond any describable words when I delivered my beautiful 6 lb 7 oz baby girl. As tears of joy, relief, and utter disbelief at her beauty ran down my face, they placed her on my chest; snuggled up next to me she immediately looked up into my eyes and stopped crying. The dark that had been covering me since Sebastian’s death lifted, and I saw this beautiful bright ray of sunshine that I loved with every molecule of my being. I knew she had made it safely and things would now be ok.
I felt like a part of me that I had always been missing and searching for was back, it seemed as if my utter purpose and meaning had finally been fulfilled in my tiny beautiful daughter. The warmth of her skin, her tiny head cradled against me, the small fingers that would grip mine all seemed to make my previously broken world complete. I spent that first night in the hospital as one of the luckiest women on earth and gladly got very little sleep as I insisted on her staying in the room with us our entire hospital stay. Sebanna loved being held from the moment she was born and spent her first 24 hours held in either mine or her dad’s arms or cradled on her dad’s chest sleeping, they were some of the bets hours of my entire life.
As I entered my first pregnancy, I was an excited, healthy, 17 year old wife and mother to two step children (whom I later adopted) I had great hope for my future of mothering and a naivety which would be shattered after suffering the devastating loss of my first child Sebastian due to Preeclampsia.
So when I became pregnant again with a little girl we would name Sebanna, I shed many fear induced tears, and stayed ever vigilant, but remained determined and held on to hope, especially as I watched her grow stronger through the many ultrasounds that were provided to ensure she arrived safely given my history with Sebastian.
Frequent monitoring and checkups were a common aspect of my pregnancy with Sebanna and as a result of the monitoring was my eventual hosplization on bed rest for nearly a month at the end of my pregnancy, which while exceedingly difficult, did nothing to derail my commitment to bring my baby girl in to this world safely.
All the efforts paid off and our hope was exceedingly rewarded beyond any describable words when I delivered my beautiful 6 lb 7 oz baby girl. As tears of joy, relief, and utter disbelief at her beauty ran down my face, they placed her on my chest; snuggled up next to me she immediately looked up into my eyes and stopped crying. The dark that had been covering me since Sebastian’s death lifted, and I saw this beautiful bright ray of sunshine that I loved with every molecule of my being. I knew she had made it safely and things would now be ok.
I felt like a part of me that I had always been missing and searching for was back, it seemed as if my utter purpose and meaning had finally been fulfilled in my tiny beautiful daughter. The warmth of her skin, her tiny head cradled against me, the small fingers that would grip mine all seemed to make my previously broken world complete. I spent that first night in the hospital as one of the luckiest women on earth and gladly got very little sleep as I insisted on her staying in the room with us our entire hospital stay. Sebanna loved being held from the moment she was born and spent her first 24 hours held in either mine or her dad’s arms or cradled on her dad’s chest sleeping, they were some of the bets hours of my entire life.
Deployment
Much to my whole families’ sadness my husband had to deploy to Iraq with the military under 30 hours after she was born. As I stood in the living room cradling Sebanna in my arms in the early morning hours, I watched as her dad kissed her, told her he loved her, and would see her again soon. Tears slipped out but I looked down at this little baby girl that filled my life with purpose and knew I could do it; knowing the strength I felt in being able to not fall to pieces was because of her.
I undertook the task of caring for Sebanna and my two older children with joy and pride. I was breastfeeding her and she was doing great, with even the Doctor’s commenting how well it must be going since “she was gaining so well” Doing it all on my own was not the easiest thing but I felt more peace than ever and Sebanna was such a happy, calm baby with a unique personality. She nursed with such a purpose, and she loved to cuddle and be held.
I wish more than anything I could end my story here, holding my beautiful girl on my chest like we both loved so very much but I can not, our story goes on in a way I never wanted or imagined.
Things took a heartbreaking turn for the worse, and I had no way to know that the beginnings of a vaccine preventable disease that would take over her tiny body were in the works.
As a new and protective mom I was ever careful to protect her. I did not want sick people around her, insisted on proper hand-washing, and maintained a diligent eye to protect her.
However; as life normally works without the ability to see into the future, things slip in and by without us ever realizing the potential impact they will have on us. Ours would come from one of my family members, who was present when Sebanna was born. She had no where to go at the time, and wanted to stay at my home. She had came down with a bad cough and despite my feelings on no ill contacts she assured me she had been to the Emergency room and had only non-contagious bronchitis, so I conceded allowing her to stay for a limited time, while attempting to keep her away from Sebanna. I knew a bit about RSV and that it could be bad in babies but had never even heard of Whooping Cough .I believe this ill family member had actually contacted whooping cough from her friend’s unvaccinated child who had a horrible cough and who routinely traveled between Mexico and Oregon.
I now know with Whooping Cough you can be contagious and spread it before you ever even show symptoms, so Sebanna may have been exposed prior to this family members cough even starting potentially as early as birth.
The Cough
I first noticed that Sebanna had a little cough and wheezing, plus a rash that was not clearing up on its own, and a slight decrease in appetite which just got worse. I took her into the doctor, and expressed my concerns, the doctor said Sebanna was fine, and when I asked if she could be tested for RSV, the doctor insisted she didn’t need it as “RSV babies have tons of stuff running from the nose and Sebanna didn’t” Even after the doctor heard Sebanna’s cough and wheezing, she insisted on sending me home with the explanation it was just “normal newborn congestion”. As for the rash, it was supposed to be a normal newborn rash. "Why do you want to do anything with it? Just leave it alone," said the doctor, which I would find was their overall attitude towards Sebanna’s health care throughout. I explained again that I was pretty concerned about the wheezing (the cough wasn’t that severe at this point) but she still refused to do any testing and simply dismissed me.
So we reluctantly returned home, and I watched Sebanna closely attempting to convince myself the doctor knew what she was talking about and I was simply being paranoid. My heart and gut however was telling me I was not. Two days later, she hadn’t improved, and had started having severe vomiting episodes which scared me badly - I knew that was not normal. This time I took her straight to the hospital. The doctor we saw there did a stomach x-ray and told me Sebanna had gas, but that other than that everything was perfectly normal. Once again, I brought up Sebanna’s coughing and wheezing, and expressed my concern however the doctor dismissed it. I later found out through her medical records that the person who did the exam on her stomach said he thought Sebanna had a small intestinal blockage (something we were never told about). Some of its symptoms would have included the vomiting, and a decrease in bowel movements, which she was also experiencing to a small extent. However, I was once again told she was fine, and sent home. Again trying to convince myself the doctors would have caught it if something was wrong and again having my heart and gut push me to keep my eyes open.
So again two days later, things were still not improving. Sebanna worsened overnight, and had her first mini blue spell (she had recovered so quickly from it that I didn’t even fully know at the time what it was). I started trying to get her in at several places to be seen. I was completely determined to get her the care she needed, so when in spite of my efforts I wasn’t able to get her in at any doctors’ offices in any reasonable amount of time I took her back to the ER desperate for someone to actually listen.
After arriving at the emergency room, a nurse took us back to triage to get Sebanna’s vitals I shared what had been happening and before I was even done the triage nurse witnessed her coughing, and the desats/heart rate and rushed her to the back. I was alone with her and they tried to make me stay out in the waiting room to wait to sign the papers I ran back to the office and insisted on being let back with her.
They now decided she did in fact need to have the swab done for RSV; to which they said she tested positive for, I was not even told until several hours later, despite the fact I stayed with her the entire time, (her autopsy later however confirmed no RSV was present just Pertussis)
As we sat there and waited for them to decide on her care they had her undressed and us stuck in the exam room by the door for several hours, I wrapped her in a blanket and held her, scared but feeling some relief that someone had seen she was in fact sick and in that hope she was finally going to be ok.
So we reluctantly returned home, and I watched Sebanna closely attempting to convince myself the doctor knew what she was talking about and I was simply being paranoid. My heart and gut however was telling me I was not. Two days later, she hadn’t improved, and had started having severe vomiting episodes which scared me badly - I knew that was not normal. This time I took her straight to the hospital. The doctor we saw there did a stomach x-ray and told me Sebanna had gas, but that other than that everything was perfectly normal. Once again, I brought up Sebanna’s coughing and wheezing, and expressed my concern however the doctor dismissed it. I later found out through her medical records that the person who did the exam on her stomach said he thought Sebanna had a small intestinal blockage (something we were never told about). Some of its symptoms would have included the vomiting, and a decrease in bowel movements, which she was also experiencing to a small extent. However, I was once again told she was fine, and sent home. Again trying to convince myself the doctors would have caught it if something was wrong and again having my heart and gut push me to keep my eyes open.
So again two days later, things were still not improving. Sebanna worsened overnight, and had her first mini blue spell (she had recovered so quickly from it that I didn’t even fully know at the time what it was). I started trying to get her in at several places to be seen. I was completely determined to get her the care she needed, so when in spite of my efforts I wasn’t able to get her in at any doctors’ offices in any reasonable amount of time I took her back to the ER desperate for someone to actually listen.
After arriving at the emergency room, a nurse took us back to triage to get Sebanna’s vitals I shared what had been happening and before I was even done the triage nurse witnessed her coughing, and the desats/heart rate and rushed her to the back. I was alone with her and they tried to make me stay out in the waiting room to wait to sign the papers I ran back to the office and insisted on being let back with her.
They now decided she did in fact need to have the swab done for RSV; to which they said she tested positive for, I was not even told until several hours later, despite the fact I stayed with her the entire time, (her autopsy later however confirmed no RSV was present just Pertussis)
As we sat there and waited for them to decide on her care they had her undressed and us stuck in the exam room by the door for several hours, I wrapped her in a blanket and held her, scared but feeling some relief that someone had seen she was in fact sick and in that hope she was finally going to be ok.
"Not even a big deal"
The admitting Dr reaffirmed this by telling me it really was “not even a big deal”, that Sebanna basically just needed an eye kept on her for the dehydration because she was so young and she said they would probably only keep her overnight to a day at most. They started repeated, failed attempts to draw blood from her. The held her arm down so tightly and for so long that it would turn purple and her fingers dark purple from being held down so tightly, she also had the nurses handprints marked on her arm which I pointed out with a crying mother and a baby in pain screaming they found she was dehydrated, I could barely stand to watch her go through it and got quite upset at the nurse after countless repeated pokes of Sebanna’s tiny arms; during which she got openly frustrated and ignored my daughters tears, while acting inexperienced and digging with the needle in her arm. I had picked up my precious angel who was crying so hard by this point and let her try to nurse while cradling her wrapped in a blanket in my arms and rocking which soothed her.
I was told that they “were not used to dealing with babies” as an explanation for their failed attempts and when they finally found someone who could get some of her blood drawn, they could not get an IV started.
Sebanna's Dr came at my request several hours after she was admitted and did not make an attempt to start an IV until I repeatedly requested one that night, as I was very concerned knowing that she was admitted dehydrated, still unable to take anything by mouth, not urinating and seemingly just left to get worse. By that time she was even more dehydrated, and they could not get one going after once again repeated attempts in which I cried almost as much as my precious baby girl all the while trying to calm her, while my heart broke watching her struggle with them with what tears she still had streaming down her precious face. They pointed out how strong she was as she fought them using her waning resources and I prayed that that strength wouldn’t fail.
Her ongoing dehydration from admittance with no maintance coupled with the fact she still was not able to eat and her quickly worsening cough spells left me extremely concerned and questioning the lack of care she was receiving. A friend had suggested maybe she would be able to use a bottle since she was too weak to nurse, so I requested the use of a breast pump in the hopes I could pump and attempt to bottle feed.
A nurse from the OB ward walked in with a pump but upon finding out Sebanna had been diagnosed with RSV immiadetly took it out sending the nurse to tell me we could not use it. Feeling ever more trapped we were than going to give her a bottle of formula, desperate for her to be able to eat/drink. As we started to prepare one a nurse came in and took it, saying we could not give her a bottle because the Dr had not given orders for one. I told her my daughter needed to eat especially with no IV for fluids and told her to call the doctor. Sebanna’s Dr would not reply to the nurses requests for the orders so she got another on call Dr at the hospital to sign so we could attempt a bottle of formula. Sebanna was unable to take the bottle and even attempting feedings bought on coughing fits which kept leading to horrifying spells where Sebanna would cough so much and be unable to catch her breath and start going blue.
In the absence of a pediatric ward they had placed her in the surgery ward, where her second nurse shared that "no she did not think Sebanna was getting the care she needed, and yes she needed better care but she said she was telling Sebanna’s Dr that and that was all she could do". Sebanna’s Dr than came in and told me this nurse was feeling stretched too thin as she had surgery patients to take care of and was not used to taking care of babies, which left me feeling on edge.
Sebanna’s oxygen consisted of an actual paper cup with tubing taped to that the oxygen flowed through. They simply told me to hold it by her face when she would cough, and it was barely helping at all. When I was having trouble getting her to start breathing again after a blue coughing fit and would push the call button I would end up either not getting a response or getting a much delayed response. I was terrified and it seemed unreal, no one seemed to know what to do.
When the nurses would be present they would pound on her while she was having a blue spell and struggling to breathe; which I was told at the next hospital they don’t ever want you to do because it works against them and makes it to where they can’t catch their breath.
I was told that they “were not used to dealing with babies” as an explanation for their failed attempts and when they finally found someone who could get some of her blood drawn, they could not get an IV started.
Sebanna's Dr came at my request several hours after she was admitted and did not make an attempt to start an IV until I repeatedly requested one that night, as I was very concerned knowing that she was admitted dehydrated, still unable to take anything by mouth, not urinating and seemingly just left to get worse. By that time she was even more dehydrated, and they could not get one going after once again repeated attempts in which I cried almost as much as my precious baby girl all the while trying to calm her, while my heart broke watching her struggle with them with what tears she still had streaming down her precious face. They pointed out how strong she was as she fought them using her waning resources and I prayed that that strength wouldn’t fail.
Her ongoing dehydration from admittance with no maintance coupled with the fact she still was not able to eat and her quickly worsening cough spells left me extremely concerned and questioning the lack of care she was receiving. A friend had suggested maybe she would be able to use a bottle since she was too weak to nurse, so I requested the use of a breast pump in the hopes I could pump and attempt to bottle feed.
A nurse from the OB ward walked in with a pump but upon finding out Sebanna had been diagnosed with RSV immiadetly took it out sending the nurse to tell me we could not use it. Feeling ever more trapped we were than going to give her a bottle of formula, desperate for her to be able to eat/drink. As we started to prepare one a nurse came in and took it, saying we could not give her a bottle because the Dr had not given orders for one. I told her my daughter needed to eat especially with no IV for fluids and told her to call the doctor. Sebanna’s Dr would not reply to the nurses requests for the orders so she got another on call Dr at the hospital to sign so we could attempt a bottle of formula. Sebanna was unable to take the bottle and even attempting feedings bought on coughing fits which kept leading to horrifying spells where Sebanna would cough so much and be unable to catch her breath and start going blue.
In the absence of a pediatric ward they had placed her in the surgery ward, where her second nurse shared that "no she did not think Sebanna was getting the care she needed, and yes she needed better care but she said she was telling Sebanna’s Dr that and that was all she could do". Sebanna’s Dr than came in and told me this nurse was feeling stretched too thin as she had surgery patients to take care of and was not used to taking care of babies, which left me feeling on edge.
Sebanna’s oxygen consisted of an actual paper cup with tubing taped to that the oxygen flowed through. They simply told me to hold it by her face when she would cough, and it was barely helping at all. When I was having trouble getting her to start breathing again after a blue coughing fit and would push the call button I would end up either not getting a response or getting a much delayed response. I was terrified and it seemed unreal, no one seemed to know what to do.
When the nurses would be present they would pound on her while she was having a blue spell and struggling to breathe; which I was told at the next hospital they don’t ever want you to do because it works against them and makes it to where they can’t catch their breath.
Transferred
Her blue spells were getting more frequent, lasting longer, and getting harder to get her oxygen levels back up from because other than the paper cup they were not giving her much help with her oxygen so she wouldn’t have to work so hard.
I again requested to speak with Sebanna’s Dr and when he finally came in I discussed her continued worsening state, the lack of care being provided, and told him I would like her to be transferred to another hospital with a pediatric ward so she could get the care she needed. He spoke to me about the trust we had built up, patted my leg and said he wasn’t sure she needed to be transferred even as he attempted to convince me of that as well. In light of my concerns, as well as a family member and friend that were present telling him they weren’t doing enough for her, he finally agreed to speak to a pediatrician after I asked for a consult. The pediatrician said yes she needed transferred, Sebanna’s Dr than signed the orders after asking me again for verification that I was sure that was what I wanted to do.
We were transferred by ambulance where Sebanna despite her pain and illness had visibly got so upset when her hat fell over her eyes so she could not see, the EMT had laughed and told the others she didn’t like not being able to look around. We arrived at the second hospital where she was admitted in the pediatric ward. They were short on nurses but did eventually get an IV started after multiple pokes.
I again wondered if I could breathe a small sigh of relief; in the hopes everything would now be ok as I felt a little better about her care knowing that she had an IV for fluids, and was in a pediatric ward where they were more experienced. I stayed in the room with her the entire time, going out only to put the pumped breast milk in the fridge/freezer, or get more bottles to pump into and then only if I could get someone to stay with her or if I could go extremely quickly if no one would stay with her, I was terrified for her to be alone. They had a tent in her crib they wanted her put in as much as possible to help with her breathing and we had made round donut props out of the blankets to prop her with but I eventually just put her car seat in which seemed to work much better and help keep her comfortable I would put her little hat on her and cover her well as it was cold in the tent and I spent most of time standing beside the crib with my hand in with her.
I was still able to hold her at that point and I wanted her to know she was not alone, so I would sit in the rocking chair close to her IV pole and monitors so they would not be pulled. She slept in the bed with me in her car seat to keep her propped, that way I could hear her, still cuddle with her and she would still be close as she never liked to sleep without me, and I would wake up when the nurses came to do anything. Terrified to leave her, I was barely even drinking yet alone eating.
The next day she had a blue spell and the nurse was having trouble getting her back up, as she panicked and hit the page button, I said I would go for help since no one was coming, I was crying and ran out asking “where in the world the Dr, the nurse needed help immediately because Sebanna wasn’t breathing”, the nurses were talking and laughing they stopped all the sudden looked at me and said they had just saw her on the monitor and she was fine; I rushed back to the room and when someone finally came the nurse relayed to them what had happened.
Seizures begin
Sebanna then began having seizures; while the nurse was in the room I noticed her behavior (tightly balled fist, shaking, and eyes rolling back) and asked the nurse what was wrong with her, at which time she checked her and asked the Dr be called. While he did not come in at that time he did later confirm what the nurses had said that it was a seizure, it lasted for about 25 mins according to the records. I held her in the rocking chair and cried, I was so terrified and did not understand why things were worsening, I still did not know about Whooping Cough and was told that the first hospital had let her get so dehydrated that her sodium levels dropped too low.
I felt so alone and scared but a kind nurse told me about her son’s seizures and tried to reassure me as we got ready to take Sebanna down for a cat scan. She asked me if I would like to ride in the wheelchair down to the CAT scan to hold Sebanna. I gladly climbed in a little pediatric wheelchair and they handed me my angel. I watched her tiny face as we went, wanting nothing more than to fix everything and make her better. She lay in my arms, looking so tiny, sleeping, with a pediatric oxygen mask on her face which was still too big. I was so scared she would have a coughing fit or seizure in the middle of the scan and just as they finished she did, terrified I quickly picked her up from the table.
Feeling so helpless and unable to help my baby as she struggled, I prayed she knew how much I loved her, and worried that she always know I was there and would never abandon her. The Dr later came in and spoke to me, he shared that she may get worse and need higher care but they could wait to transfer until that happened. Having seen how bad it could be to simply wait I asked through tears why in the world he would wait for her to get worse if he thought she would and needed more care, and so he decided we would both be more comfortable if she got transferred to where a higher level of care would be available in the event she needed it since they didn’t have a pediatric intensive care unit. Wore out and worried sick I quickly gathered our things for yet another transfer, but when the issue of weight came into play about our stuff as we had to be airlifted I quickly volunteered to leave everything so I could go with her.
As the Med team was working on their papers for the transfer she had another fit, they had just given her a shot of a sedative and the Med team gave her another I stayed right beside the bed and they bundled her up than strapped her onto the rolling bed and put a plastic square tent over her head I followed closely behind and climbed into the ambulance.
We were taken via ambulance, then plane, then ambulance to the third and what would unknowingly be the final hospital. The med team transporting her said they were not “not at all comfortable” with her IV and felt it was bad, so they attempted to restart a new one while in the plane but they were unsuccessful, at which point she already had collapsed veins and black and blue marks from all the sticks.
She was still having blue spells at this point but at the third things worsened even more. I was alone, with no help, no transportation, no one to help me advocate, in a big city; I had never been so scared, tired and worried. I refused to leave my baby for more than a few minutes so even going to use the restroom was agonizing for me. At one point a nurse insisted I go get food and assured me she would stay with Sebanna until I returned, I rushed back to find Sebanna alone. The small glass room connected to another room by a patient only bathroom would be where two people would die, one physically, and one in spirit.
The previous hospital had briefly mentioned the possibility of Pertussis just before our transfer, of which I still knew nothing about and this hospital said they were going to test her. At one point I watched as Sebanna’s heart rate was steadily rising from 210 to 218 and up; I noted my concern with the nurse and asked to speak with the Dr she said he knew when it was at 210 and wasn’t worried then, so she refused my request saying she wasn’t going to “bother him”. So I went out and asked someone at the nurses station to please call the Dr for me, she instead told the same nurse who I had asked previously to do it, so the nurse who had refused came stomping in asking what I was doing asking for the Dr when she had already told me “no” I told her I was very worried about my baby and wanted to see him. I asked if she could be given a feeding tube as well as knowing she was hungry was torture, at one point they attempted to put one in but ended up removing it.
The day after she was admitted she had a severe blue spell, during which she desated and was unable to come back up from on her own, she ended up being bag masked ventilated and still not recovering, at which point they had to intubate her. The Dr whistled while he worked, I asked why she was unresponsive and he said he had paralyzed her so she would not fight the machine. The Dr said he had told me she might get tired and need help breathing for awhile but that things were ok. The nurses were telling me that she “was gonna be fine” she was “doing ok” and the only thing that had changed was “we might be there a little longer than we were originally told” Oh how I wish that is how our story went.
Watching my baby not be able to breathe, be incubated and stitched, hearing her stomach growl and knowing she was hungry but I couldn’t feed her, seeing her swell, and feel cold was beyond physical torture. I wanted to be the one to suffer if someone had to, not her. I gladly would have taken every ounce of her suffering and then some if I could have.
I felt so alone and scared but a kind nurse told me about her son’s seizures and tried to reassure me as we got ready to take Sebanna down for a cat scan. She asked me if I would like to ride in the wheelchair down to the CAT scan to hold Sebanna. I gladly climbed in a little pediatric wheelchair and they handed me my angel. I watched her tiny face as we went, wanting nothing more than to fix everything and make her better. She lay in my arms, looking so tiny, sleeping, with a pediatric oxygen mask on her face which was still too big. I was so scared she would have a coughing fit or seizure in the middle of the scan and just as they finished she did, terrified I quickly picked her up from the table.
Feeling so helpless and unable to help my baby as she struggled, I prayed she knew how much I loved her, and worried that she always know I was there and would never abandon her. The Dr later came in and spoke to me, he shared that she may get worse and need higher care but they could wait to transfer until that happened. Having seen how bad it could be to simply wait I asked through tears why in the world he would wait for her to get worse if he thought she would and needed more care, and so he decided we would both be more comfortable if she got transferred to where a higher level of care would be available in the event she needed it since they didn’t have a pediatric intensive care unit. Wore out and worried sick I quickly gathered our things for yet another transfer, but when the issue of weight came into play about our stuff as we had to be airlifted I quickly volunteered to leave everything so I could go with her.
As the Med team was working on their papers for the transfer she had another fit, they had just given her a shot of a sedative and the Med team gave her another I stayed right beside the bed and they bundled her up than strapped her onto the rolling bed and put a plastic square tent over her head I followed closely behind and climbed into the ambulance.
We were taken via ambulance, then plane, then ambulance to the third and what would unknowingly be the final hospital. The med team transporting her said they were not “not at all comfortable” with her IV and felt it was bad, so they attempted to restart a new one while in the plane but they were unsuccessful, at which point she already had collapsed veins and black and blue marks from all the sticks.
She was still having blue spells at this point but at the third things worsened even more. I was alone, with no help, no transportation, no one to help me advocate, in a big city; I had never been so scared, tired and worried. I refused to leave my baby for more than a few minutes so even going to use the restroom was agonizing for me. At one point a nurse insisted I go get food and assured me she would stay with Sebanna until I returned, I rushed back to find Sebanna alone. The small glass room connected to another room by a patient only bathroom would be where two people would die, one physically, and one in spirit.
The previous hospital had briefly mentioned the possibility of Pertussis just before our transfer, of which I still knew nothing about and this hospital said they were going to test her. At one point I watched as Sebanna’s heart rate was steadily rising from 210 to 218 and up; I noted my concern with the nurse and asked to speak with the Dr she said he knew when it was at 210 and wasn’t worried then, so she refused my request saying she wasn’t going to “bother him”. So I went out and asked someone at the nurses station to please call the Dr for me, she instead told the same nurse who I had asked previously to do it, so the nurse who had refused came stomping in asking what I was doing asking for the Dr when she had already told me “no” I told her I was very worried about my baby and wanted to see him. I asked if she could be given a feeding tube as well as knowing she was hungry was torture, at one point they attempted to put one in but ended up removing it.
The day after she was admitted she had a severe blue spell, during which she desated and was unable to come back up from on her own, she ended up being bag masked ventilated and still not recovering, at which point they had to intubate her. The Dr whistled while he worked, I asked why she was unresponsive and he said he had paralyzed her so she would not fight the machine. The Dr said he had told me she might get tired and need help breathing for awhile but that things were ok. The nurses were telling me that she “was gonna be fine” she was “doing ok” and the only thing that had changed was “we might be there a little longer than we were originally told” Oh how I wish that is how our story went.
Watching my baby not be able to breathe, be incubated and stitched, hearing her stomach growl and knowing she was hungry but I couldn’t feed her, seeing her swell, and feel cold was beyond physical torture. I wanted to be the one to suffer if someone had to, not her. I gladly would have taken every ounce of her suffering and then some if I could have.
Red Cross couldn't bring Samuel home
At this point we had sent five Red Cross messages to get my husband home; although the Dr was saying it was not life threatening and they only gave him three. The military refused to send him home. As the nurse sponge bathed Sebanna even ventilated she had a coughing fit when they kept picking her up, the nurse blew it off when the male nurse helping her mentioned it and I was so terrified that she was laying there unable to even breathe as she had coughing fits that were no longer even outwardly visible.
I felt so helpless to help the person who meant the most in the world to me and I didn’t know what to do. They started pulling a lot of blood up when they would suction her after she was incubated and it with the ever growing list of things I was seeing had my heart shaking in fear. The last thing I got to do for my baby girl, the closest I had got to mother her in days was when I put socks on her hands and feet. The medicine she was on made her blood vessels clamp down, plus she had been paralyzed, and her hands and feet were limp, ice cold and turning purple. I pointed this out to the doctor during which time he suddenly took notice and said I was right, later he would dictate her body was shutting down. I put socks on her feet and makeshift warm packs (tied medical gloves filled with warm water) and socks on her hands. I didn’t have any of her mitts with me, and they wouldn’t let me stay by the side of the bed holding her hands for very long, since they needed access to her but I wanted so badly to take care of her. I remember looking down and seeing how grey and cold she was (I was told it was from the medicines they put her on). I was so terrified and wanted them to be able to make her better, as I stood there barely able to breathe from the fear and pain, the nurse was teased by another nurse about the makeshift packs while they attempted to place a cathetheter and she was saying how it’s ok for me to look like an idiot but not her I remember being stunned that anyone could think of such unimportant things.
The doctor had poked her again and again in the inner thigh and underarm trying to put in an internal blood pressure line. He had done it so many times it looked like he had cut her and I even asked him. As I watched them doing all these horrible things to her I asked him if he had given her any pain medicine (as she had also gotten a jugular catheter and stitches when he intubated her), He said she didn’t need it, since she was paralyzed. I asked him if he was sure she was not in pain. His response was exactly this: "Guess we’ll find out". It is beyond torture as it replays again and again in my mind. I keep asking myself, what if she was laying there in pain and couldn’t even cry or fight them because she was paralyzed? It is the worse feeling in the world to stand by and watch someone you would die for suffer and not be able to do anything. They said she needed transferred to Portland to for a double volume exchange transfusion but would have to find another Dr to take her which they never tried to my knowledge. They also said they were going to give her gamma globulin
I felt so helpless to help the person who meant the most in the world to me and I didn’t know what to do. They started pulling a lot of blood up when they would suction her after she was incubated and it with the ever growing list of things I was seeing had my heart shaking in fear. The last thing I got to do for my baby girl, the closest I had got to mother her in days was when I put socks on her hands and feet. The medicine she was on made her blood vessels clamp down, plus she had been paralyzed, and her hands and feet were limp, ice cold and turning purple. I pointed this out to the doctor during which time he suddenly took notice and said I was right, later he would dictate her body was shutting down. I put socks on her feet and makeshift warm packs (tied medical gloves filled with warm water) and socks on her hands. I didn’t have any of her mitts with me, and they wouldn’t let me stay by the side of the bed holding her hands for very long, since they needed access to her but I wanted so badly to take care of her. I remember looking down and seeing how grey and cold she was (I was told it was from the medicines they put her on). I was so terrified and wanted them to be able to make her better, as I stood there barely able to breathe from the fear and pain, the nurse was teased by another nurse about the makeshift packs while they attempted to place a cathetheter and she was saying how it’s ok for me to look like an idiot but not her I remember being stunned that anyone could think of such unimportant things.
The doctor had poked her again and again in the inner thigh and underarm trying to put in an internal blood pressure line. He had done it so many times it looked like he had cut her and I even asked him. As I watched them doing all these horrible things to her I asked him if he had given her any pain medicine (as she had also gotten a jugular catheter and stitches when he intubated her), He said she didn’t need it, since she was paralyzed. I asked him if he was sure she was not in pain. His response was exactly this: "Guess we’ll find out". It is beyond torture as it replays again and again in my mind. I keep asking myself, what if she was laying there in pain and couldn’t even cry or fight them because she was paralyzed? It is the worse feeling in the world to stand by and watch someone you would die for suffer and not be able to do anything. They said she needed transferred to Portland to for a double volume exchange transfusion but would have to find another Dr to take her which they never tried to my knowledge. They also said they were going to give her gamma globulin
Acceptance, no
Sebanna died after they made an incision to drain her lung, I remember the clanking of the metal scissors being thrown in the sink after they had been using them to cut my tiny baby. They said the IV line they had put in was sending all the fluid to her lungs. A cardiologist was called in to assist and as Sebanna was dying, he answered his cell phone and started talking and laughing. I was near hysterical and in disbelief that a Dr would even answer his cell phone when an infant lay needing immediate care. In tears I asked “what in the world” he was doing, he did not respond and in disbelieving, tear filled anger I said they were “supposed to be helping her”, at which time he finally turned around and glared at me. He told the nurse it was no use to try to save Sebanna. What if she heard that? I am still so tortured by the thought. At the very end, the nurse was doing chest compressions, and the heart doctor swatted her hand away to make her stop so he could use the ultrasound machine. Then he didn’t want her to restart, I begged them not to give up. As the Dr stood there and told me they would do no more I remember my screams, and my pathetic attempt to reach for his hand with his college ring, to beg and plead to save her promising all I had.
Through the tears and pain, my mind shut down refusing to accept, refusing to think or believe. A rocking chair was bought in and my baby so previously full of life was handed to me silent and gone. They promised we would make a quilt with her hand and foot prints, my mind could not deal with the pain. I could not communicate and I would later realize the quilt never happened, I simply sat, and rocked my baby girl and prayed that this nightmare end immediately. That I wake up and everything be fine or that I never open my eyes again. As the nurse left the room and went to the patient next door, her voice cracked through my mind as she was telling the other parents that Sebanna had… and “just been too young to fight…” before they continued on talking and laughing as if nothing had happened. My world shattered. My baby girl, my whole purpose in life, my sunshine, my miracle baby, this beautiful angel who had changed my life was gone. I could not believe nor accept it, people said careless things like I wasn’t even there and how I wished to not be. They started cleaning the room while I sat and just rocked her I begged for the blankets she had slept on but they said they didn’t know I wanted them and had already taken them. I clutched the remaining one wrapped around her, I held her close, and I wanted only to die if I could not save her. Wheeled down to the emergency room with my silent daughter in my arms they pulled a sheet around her face. The pain seared through me worse than any thing I could ever describe, or could have ever imagined. I wanted to go with her so I could take care of her as I had promised I always would even if that meant I was not on this earth, I was stuck in a room, laid on a stiff hospital bed cradling my baby girl with the mind ripping realization trying to break through that this would be my last chance. I had not slept in days and knew now that sleep could never take me far enough away, I could not escape. I wanted to rock my baby in the chair while I died. The tears could not stop the body heaving, full-hearted cries of pain. Eventually my body shut down as I fought to the last moment, a short time later my eyes opened to fluid draining out of my babies incision as the nurse roughly wiped it and took the breathing tube out, it was a surreal horrible picture, a nightmare of unbearable agony playing out on someone I loved more than life it’s self. I just wanted to wake up or die the rest of the way. Somehow with what felt like no air left in my lungs, and no possible way to continue breathing the crying still could not stop. I dressed my baby girl as carefully as I could, I begged for more time, I begged they not take her as they came in and begin insisting, my mind was shattering at the realization that this was it, I could not fix it, I could not change it, she had suffered and died and I could do nothing. I wrote on the back of a photo that I pulled from my purse of me and her dad when I was pregnant with her a message for her to take and tucked it in her blanket. As they took her my heart wanted so badly to stop, the fears still pouring from my cheeks betrayed a body that no longer wanted to live. I lay trapped in a room, and clutched a brown paper bag with the blankets I had been able to get that Sebanna had laid on, unable to escape the reality, with a swollen chest I refused to pump. I cried myself into coughing fits from the Whooping cough now surging through my own body that took my air but left me alive to be trapped in agony and pain worse than any ever imaginable. I was alone, more alone than ever and the person who meant everything to me was down in the hospitals morgue where I couldn’t even hold her and let her know I had not abandoned her. I felt I had failed my baby girl, that I should have been able to save her. Whooping Cough doesn’t care how much you love your child, or how good of a parent you are, it doesn’t care if it steals the most precious things from the planet and leaves an unimaginable suffering it simply ravages through and destroys leaving lifelong scars behind
Through the tears and pain, my mind shut down refusing to accept, refusing to think or believe. A rocking chair was bought in and my baby so previously full of life was handed to me silent and gone. They promised we would make a quilt with her hand and foot prints, my mind could not deal with the pain. I could not communicate and I would later realize the quilt never happened, I simply sat, and rocked my baby girl and prayed that this nightmare end immediately. That I wake up and everything be fine or that I never open my eyes again. As the nurse left the room and went to the patient next door, her voice cracked through my mind as she was telling the other parents that Sebanna had… and “just been too young to fight…” before they continued on talking and laughing as if nothing had happened. My world shattered. My baby girl, my whole purpose in life, my sunshine, my miracle baby, this beautiful angel who had changed my life was gone. I could not believe nor accept it, people said careless things like I wasn’t even there and how I wished to not be. They started cleaning the room while I sat and just rocked her I begged for the blankets she had slept on but they said they didn’t know I wanted them and had already taken them. I clutched the remaining one wrapped around her, I held her close, and I wanted only to die if I could not save her. Wheeled down to the emergency room with my silent daughter in my arms they pulled a sheet around her face. The pain seared through me worse than any thing I could ever describe, or could have ever imagined. I wanted to go with her so I could take care of her as I had promised I always would even if that meant I was not on this earth, I was stuck in a room, laid on a stiff hospital bed cradling my baby girl with the mind ripping realization trying to break through that this would be my last chance. I had not slept in days and knew now that sleep could never take me far enough away, I could not escape. I wanted to rock my baby in the chair while I died. The tears could not stop the body heaving, full-hearted cries of pain. Eventually my body shut down as I fought to the last moment, a short time later my eyes opened to fluid draining out of my babies incision as the nurse roughly wiped it and took the breathing tube out, it was a surreal horrible picture, a nightmare of unbearable agony playing out on someone I loved more than life it’s self. I just wanted to wake up or die the rest of the way. Somehow with what felt like no air left in my lungs, and no possible way to continue breathing the crying still could not stop. I dressed my baby girl as carefully as I could, I begged for more time, I begged they not take her as they came in and begin insisting, my mind was shattering at the realization that this was it, I could not fix it, I could not change it, she had suffered and died and I could do nothing. I wrote on the back of a photo that I pulled from my purse of me and her dad when I was pregnant with her a message for her to take and tucked it in her blanket. As they took her my heart wanted so badly to stop, the fears still pouring from my cheeks betrayed a body that no longer wanted to live. I lay trapped in a room, and clutched a brown paper bag with the blankets I had been able to get that Sebanna had laid on, unable to escape the reality, with a swollen chest I refused to pump. I cried myself into coughing fits from the Whooping cough now surging through my own body that took my air but left me alive to be trapped in agony and pain worse than any ever imaginable. I was alone, more alone than ever and the person who meant everything to me was down in the hospitals morgue where I couldn’t even hold her and let her know I had not abandoned her. I felt I had failed my baby girl, that I should have been able to save her. Whooping Cough doesn’t care how much you love your child, or how good of a parent you are, it doesn’t care if it steals the most precious things from the planet and leaves an unimaginable suffering it simply ravages through and destroys leaving lifelong scars behind
What we want
Please go to the event or the petition and invite your friends and sign!
https://www.facebook.com/events/103690206450685/
"We are asking for Sebanna's Law. We ask that a new requirement be created to require the State Department of Health to send out a Public Health Warning Notice, in the form of a low cost post card should be sent to all households, businesses and Post Office Boxes in the affected area. This should happen as soon as any reportable communicable disease reaches the epidemic threshold, which is predetermined by the state Department of Health, in conjunction with the CDC."
Contact Oregon Legislators here: Oregon State Legislature - Find Your Legislator
http://www.leg.state.or.us/findlegsltr/
Sign the petition for Sebanna's Law in Oregon
http://www.change.org/petitions/oregon-law-to-send-out-an-epidemic-warning-to-citizens-sebanna-s-law
https://www.facebook.com/events/103690206450685/
"We are asking for Sebanna's Law. We ask that a new requirement be created to require the State Department of Health to send out a Public Health Warning Notice, in the form of a low cost post card should be sent to all households, businesses and Post Office Boxes in the affected area. This should happen as soon as any reportable communicable disease reaches the epidemic threshold, which is predetermined by the state Department of Health, in conjunction with the CDC."
Contact Oregon Legislators here: Oregon State Legislature - Find Your Legislator
http://www.leg.state.or.us/findlegsltr/
Sign the petition for Sebanna's Law in Oregon
http://www.change.org/petitions/oregon-law-to-send-out-an-epidemic-warning-to-citizens-sebanna-s-law