Sarah's Twin Daughter   — Sarah Pierce, CA, USA

In October of 2004 I found out I was pregnant with twins. This was my third pregnancy, I had a three year old son, and 18 month old daughter. Though it was shocking, I could not have been more excited. After a very uncomplicated pregnancy my water broke five weeks early. This was a complication I had been warned about, and was not all surprised by it. My girls came in at 5 pounds 11 ounces, and 5 pounds 3 ounces. They were healthy, and we all went home two days later. When the girls were 22 days old, the smaller baby became lethargic. I didn't think much of it at the moment, but as the day progressed I became increasingly concerned. She was white as a sheet, lethargic, wouldn't eat, her breathing was labored, and she cried in her sleep. That evening I decided to take her to the emergency room. After six hours they decided she had a collasped lung and recommended she be sent to the Childrens' Hospital which is about 30 miles from our home town. Because her blood gases were unusually low, they called an ambulance to transport her. It took the transport team over an hour to prep her to be moved, and we could tell something more was wrong. They gave her an iv antibiotic before we left, and decided that she needed to be intubated because she was having apnia. She regularly stopped breathing for up to 20 seconds at a time. Soon after we arrived at the Children's Hospital the doctor came to us and said that her diagnosis was wrong. There was a fold in the blanket she had been laying on, and that made it look like her lung was collapsed on the xray. They believed she had a terrible infection ravaging her body, but they didn't know what. They came shortly and asked for permission to do a spinal tap. The doctor told us it was yellow and cloudy...both very bad things. In the mean time she is on a ventilator, an iv in both arms and legs, they tell us they will need to put in a central and arterial line, she has a catheter, she is receiving medication in 12-15 iv lines at a time, she will need a blood transfusion soon, her heart rate is dangerously high, her blood gases are low, her blood pressure is low, and they say that things look really bad. Her nurse could not leave the room all night because every alarm she has is going off all the time. The next day they tell us she has meningitis. Though they don't know what caused it, they do know its bacterial; and an infectious disease doctor says she has never seen so much bacteria in any spinal tap. Our hearts are broken, not even 48 hours earlier we had two beautiful babies, and now they tell us one will likely die. After several blood transfusions her red and white blood cells are both dangerously low, her tiny body was losing the battle and wasn't even fighting the infection. After nearly a week of despair, heartbreak, and nothing but bad news, she finally turns a corner. The infection is clearing up quickly, but due to swelling in the brain, they believe she has suffered devastating brain damage. They said her CT Scan showed low density, meaning her brain was more liquid than solid. They tell us she may not be able to maintain her airway or swallow, and that we need to start thinking about what is fair for her. After a week of bad news, this is the worst. In a few days they begin to wean her off medications and machines. She is taken off the ventilator and does fine, she is fed, and swallows well; though she is very weak. Two weeks after she was admitted she is released. A subsequent CT Scan showed that her brain is scarred, but it is not nearly as bad as previously thought. She failed all hearing tests, is weaker than the day she was born; but is alive, and we are glad to take her home. We have now been home with her for three weeks. We know she can hear loud things, which means she can at least get hearing aids. We fear she is blind, but this has not been confirmed by any doctor. She is already showing signs of developmental delay; but we try not to rush her, knowing she has much ground to make up before she can progress. We are in the process of starting therapy for her. We are still very hopeful that she will completely recover and be able to live a normal life; but some doubt and fear slips in often, and I find myself crying over her frequently. However, I keep my faith. By all medical accounts she should not have survived, and we know the doctors were surprised that she did. I don't believe for one moment that the Lord spared her life to let her be a vegetable. I am excited and anxious to see what the Lord will do in her life and our family's life as a result of this experience. No matter what happens, we are more than happy to have her as she is. This is an update for Sarah's Twin Daughter's It feels like forever ago when I first submitted our story, but I can still remember it like yesterday. My twins will be three years old in May (08); their names are Alexa and Aleya, since I didn't mention that before, and Aleya is the one that had meningitis. It hasn't been easy by any means, but we are making it. There have been many ups and downs, and I have cried more days than I haven't since they were born. Within about a month and a half after Aleya was released from the hospital we were back in the ER with her. It was determined that she had hydrocephalus due to the brain damage she had suffered. They monitored her for about two months before it was determined that she would need to have a shunt placed in her head. It made a world of difference for her. She was absolutely lifeless before the shunt. All she did was eat and sleep. She hardly moved, and rarely made any noise. Her development continued to progress very slowly, but at least it progressed. It took her months to be able to hold her head up, and she didn't sit up until about 21 months. Now she can walk with a walker, and that gives her and us alot of freedom. She has cerebral palsy, but it is very mild. It really only effects her right leg, so that is a blessing. She has had a lot of vision problems. She has what is called Cortical Vision Impairment which means there is not actually anything wrong with her eyes, but due to her brain damage her brain can't see what her eyes see, so she is blind. Or at least she was until she was about nine months old. It slowly improved from there, and she now sees well enough to function. No one looking at her would think there is anything wrong with her, but she is legally blind. She had to have surgery on her right eye this year to repair a cross eye, and we are very happy with the results. Her hearing is pretty good, but there still is no definite diagnosis on how much hearing she has lost. Overall she is doing better than we could have ever hoped, but it has been a hard fight. There were many, many months when it looked like it would be just as bad as they said, but after countless hours of therapy, lots of tears, lots of prayers, and lots of stubborn determination from her she is doing great. She still is significantly delayed and will be starting in a special education preschool when she turns three. I hate to send her as I have kept all my kids home with me until kindergarten, but it is in her best interests to continue with intensive intervention. She is as sweet as any baby could possibly be, and she fills my heart with joy. I even find myself being grateful for the situation we are in. I am a young mother, and my children at times have felt like a burden to me, but when I think about what could have been it brings me to my knees. She could be gone, it could have happened to anyone of my children. I love them, I love staying at home with them, and her illness has renewed my heart towards them. There is nothing I would rather be than their mother. She is just a little angel. She has endured so much. Sometimes I cry just to think about all the medical tests, procedures, and evaluations she has had to endure. My other children have never had to have these things, and I do feel angry sometimes that she does. She did nothing to deserve this. A huge blessing we have received out of this is how sensitive our other children are to her needs. They are gentle, loving, and concerned for her. They are very aware of what happened and they know that Leya is 'special'. Alexa especially looks out for her. I get angry about that sometimes, too. Alexa won't have the same kind of relationship with Leya as she would have if this had never happened. They are so different developmentally, and may always be that way. They will likely go to different schools, and that breaks my heart. But you can tell that their hearts know they are twins. They have their own little language that no one else understands, and they just go together like twin sisters should. They fight, and hug, and kiss, and play the way that they should. My life still doesn't feel normal, everything revolves around what Aleya needs. I guess I'll just have to get used to that being normal. My heart is still very raw about this situation. I check this website periodically, and I still weep when I read Leya's story. I can remember how those days felt. How my heart was heavy and sad everyday, how I cried everyday, how I feared what the future held for my little angel. I am happy to say that our world is brighter, though not perfect, but we are happy. We enjoy our children. Aleya has recovered to a point where we can just rejoice with every new thing she does. Every new word, every new step, every new everything. We wish this never happened. I wish it would never happen to anyone else again. But life goes on, and we are so happy that ours is going on with Aleya. We would be broken and incomplete without her. ~~~~~~~~~~~~~~ This is an update for Sarah's Twin Daughter's Story: It feels like forever ago when I first submitted our story, but I can still remember it like yesterday. My twins will be three years old in May (08); their names are Alexa and Aleya, since I didn't mention that before, and Aleya is the one that had meningitis. It hasn't been easy by any means, but we are making it. There have been many ups and downs, and I have cried more days than I haven't since they were born. Within about a month and a half after Aleya was released from the hospital we were back in the ER with her. It was determined that she had hydrocephalus due to the brain damage she had suffered. They monitored her for about two months before it was determined that she would need to have a shunt placed in her head. It made a world of difference for her. She was absolutely lifeless before the shunt. All she did was eat and sleep. She hardly moved, and rarely made any noise. Her development continued to progress very slowly, but at least it progressed. It took her months to be able to hold her head up, and she didn't sit up until about 21 months. Now she can walk with a walker, and that gives her and us alot of freedom. She has cerebral palsy, but it is very mild. It really only effects her right leg, so that is a blessing. She has had a lot of vision problems. She has what is called Cortical Vision Impairment which means there is not actually anything wrong with her eyes, but due to her brain damage her brain can't see what her eyes see, so she is blind. Or at least she was until she was about nine months old. It slowly improved from there, and she now sees well enough to function. No one looking at her would think there is anything wrong with her, but she is legally blind. She had to have surgery on her right eye this year to repair a cross eye, and we are very happy with the results. Her hearing is pretty good, but there still is no definite diagnosis on how much hearing she has lost. Overall she is doing better than we could have ever hoped, but it has been a hard fight. There were many, many months when it looked like it would be just as bad as they said, but after countless hours of therapy, lots of tears, lots of prayers, and lots of stubborn determination from her she is doing great. She still is significantly delayed and will be starting in a special education preschool when she turns three. I hate to send her as I have kept all my kids home with me until kindergarten, but it is in her best interests to continue with intensive intervention. She is as sweet as any baby could possibly be, and she fills my heart with joy. I even find myself being grateful for the situation we are in. I am a young mother, and my children at times have felt like a burden to me, but when I think about what could have been it brings me to my knees. She could be gone, it could have happened to anyone of my children. I love them, I love staying at home with them, and her illness has renewed my heart towards them. There is nothing I would rather be than their mother. She is just a little angel. She has endured so much. Sometimes I cry just to think about all the medical tests, procedures, and evaluations she has had to endure. My other children have never had to have these things, and I do feel angry sometimes that she does. She did nothing to deserve this. A huge blessing we have received out of this is how sensitive our other children are to her needs. They are gentle, loving, and concerned for her. They are very aware of what happened and they know that Leya is 'special'. Alexa especially looks out for her. I get angry about that sometimes, too. Alexa won't have the same kind of relationship with Leya as she would have if this had never happened. They are so different developmentally, and may always be that way. They will likely go to different schools, and that breaks my heart. But you can tell that their hearts know they are twins. They have their own little language that no one else understands, and they just go together like twin sisters should. They fight, and hug, and kiss, and play the way that they should. My life still doesn't feel normal, everything revolves around what Aleya needs. I guess I'll just have to get used to that being normal. My heart is still very raw about this situation. I check this website periodically, and I still weep when I read Leya's story. I can remember how those days felt. How my heart was heavy and sad everyday, how I cried everyday, how I feared what the future held for my little angel. I am happy to say that our world is brighter, though not perfect, but we are happy. We enjoy our children. Aleya has recovered to a point where we can just rejoice with every new thing she does. Every new word, every new step, every new everything. We wish this never happened. I wish it would never happen to anyone else again. But life goes on, and we are so happy that ours is going on with Aleya. We would be broken and incomplete without her. ~~~~~~~~~~~~~~~~~~~~~~This is an update for Sarah's Twin Daughter's It feels like forever ago when I first submitted our story, but I can still remember it like yesterday. My twins will be three years old in May (08); their names are Alexa and Aleya, since I didn't mention that before, and Aleya is the one that had meningitis. It hasn't been easy by any means, but we are making it. There have been many ups and downs, and I have cried more days than I haven't since they were born. Within about a month and a half after Aleya was released from the hospital we were back in the ER with her. It was determined that she had hydrocephalus due to the brain damage she had suffered. They monitored her for about two months before it was determined that she would need to have a shunt placed in her head. It made a world of difference for her. She was absolutely lifeless before the shunt. All she did was eat and sleep. She hardly moved, and rarely made any noise. Her development continued to progress very slowly, but at least it progressed. It took her months to be able to hold her head up, and she didn't sit up until about 21 months. Now she can walk with a walker, and that gives her and us alot of freedom. She has cerebral palsy, but it is very mild. It really only effects her right leg, so that is a blessing. She has had a lot of vision problems. She has what is called Cortical Vision Impairment which means there is not actually anything wrong with her eyes, but due to her brain damage her brain can't see what her eyes see, so she is blind. Or at least she was until she was about nine months old. It slowly improved from there, and she now sees well enough to function. No one looking at her would think there is anything wrong with her, but she is legally blind. She had to have surgery on her right eye this year to repair a cross eye, and we are very happy with the results. Her hearing is pretty good, but there still is no definite diagnosis on how much hearing she has lost. Overall she is doing better than we could have ever hoped, but it has been a hard fight. There were many, many months when it looked like it would be just as bad as they said, but after countless hours of therapy, lots of tears, lots of prayers, and lots of stubborn determination from her she is doing great. She still is significantly delayed and will be starting in a special education preschool when she turns three. I hate to send her as I have kept all my kids home with me until kindergarten, but it is in her best interests to continue with intensive intervention. She is as sweet as any baby could possibly be, and she fills my heart with joy. I even find myself being grateful for the situation we are in. I am a young mother, and my children at times have felt like a burden to me, but when I think about what could have been it brings me to my knees. She could be gone, it could have happened to anyone of my children. I love them, I love staying at home with them, and her illness has renewed my heart towards them. There is nothing I would rather be than their mother. She is just a little angel. She has endured so much. Sometimes I cry just to think about all the medical tests, procedures, and evaluations she has had to endure. My other children have never had to have these things, and I do feel angry sometimes that she does. She did nothing to deserve this. A huge blessing we have received out of this is how sensitive our other children are to her needs. They are gentle, loving, and concerned for her. They are very aware of what happened and they know that Leya is 'special'. Alexa especially looks out for her. I get angry about that sometimes, too. Alexa won't have the same kind of relationship with Leya as she would have if this had never happened. They are so different developmentally, and may always be that way. They will likely go to different schools, and that breaks my heart. But you can tell that their hearts know they are twins. They have their own little language that no one else understands, and they just go together like twin sisters should. They fight, and hug, and kiss, and play the way that they should. My life still doesn't feel normal, everything revolves around what Aleya needs. I guess I'll just have to get used to that being normal. My heart is still very raw about this situation. I check this website periodically, and I still weep when I read Leya's story. I can remember how those days felt. How my heart was heavy and sad everyday, how I cried everyday, how I feared what the future held for my little angel. I am happy to say that our world is brighter, though not perfect, but we are happy. We enjoy our children. Aleya has recovered to a point where we can just rejoice with every new thing she does. Every new word, every new step, every new everything. We wish this never happened. I wish it would never happen to anyone else again. But life goes on, and we are so happy that ours is going on with Aleya. We would be broken and incomplete without her. This is an update for Sarah's Twin Daughter's It feels like forever ago when I first submitted our story, but I can still remember it like yesterday. My twins will be three years old in May (08); their names are Alexa and Aleya, since I didn't mention that before, and Aleya is the one that had meningitis. It hasn't been easy by any means, but we are making it. There have been many ups and downs, and I have cried more days than I haven't since they were born. Within about a month and a half after Aleya was released from the hospital we were back in the ER with her. It was determined that she had hydrocephalus due to the brain damage she had suffered. They monitored her for about two months before it was determined that she would need to have a shunt placed in her head. It made a world of difference for her. She was absolutely lifeless before the shunt. All she did was eat and sleep. She hardly moved, and rarely made any noise. Her development continued to progress very slowly, but at least it progressed. It took her months to be able to hold her head up, and she didn't sit up until about 21 months. Now she can walk with a walker, and that gives her and us alot of freedom. She has cerebral palsy, but it is very mild. It really only effects her right leg, so that is a blessing. She has had a lot of vision problems. She has what is called Cortical Vision Impairment which means there is not actually anything wrong with her eyes, but due to her brain damage her brain can't see what her eyes see, so she is blind. Or at least she was until she was about nine months old. It slowly improved from there, and she now sees well enough to function. No one looking at her would think there is anything wrong with her, but she is legally blind. She had to have surgery on her right eye this year to repair a cross eye, and we are very happy with the results. Her hearing is pretty good, but there still is no definite diagnosis on how much hearing she has lost. Overall she is doing better than we could have ever hoped, but it has been a hard fight. There were many, many months when it looked like it would be just as bad as they said, but after countless hours of therapy, lots of tears, lots of prayers, and lots of stubborn determination from her she is doing great. She still is significantly delayed and will be starting in a special education preschool when she turns three. I hate to send her as I have kept all my kids home with me until kindergarten, but it is in her best interests to continue with intensive intervention. She is as sweet as any baby could possibly be, and she fills my heart with joy. I even find myself being grateful for the situation we are in. I am a young mother, and my children at times have felt like a burden to me, but when I think about what could have been it brings me to my knees. She could be gone, it could have happened to anyone of my children. I love them, I love staying at home with them, and her illness has renewed my heart towards them. There is nothing I would rather be than their mother. She is just a little angel. She has endured so much. Sometimes I cry just to think about all the medical tests, procedures, and evaluations she has had to endure. My other children have never had to have these things, and I do feel angry sometimes that she does. She did nothing to deserve this. A huge blessing we have received out of this is how sensitive our other children are to her needs. They are gentle, loving, and concerned for her. They are very aware of what happened and they know that Leya is 'special'. Alexa especially looks out for her. I get angry about that sometimes, too. Alexa won't have the same kind of relationship with Leya as she would have if this had never happened. They are so different developmentally, and may always be that way. They will likely go to different schools, and that breaks my heart. But you can tell that their hearts know they are twins. They have their own little language that no one else understands, and they just go together like twin sisters should. They fight, and hug, and kiss, and play the way that they should. My life still doesn't feel normal, everything revolves around what Aleya needs. I guess I'll just have to get used to that being normal. My heart is still very raw about this situation. I check this website periodically, and I still weep when I read Leya's story. I can remember how those days felt. How my heart was heavy and sad everyday, how I cried everyday, how I feared what the future held for my little angel. I am happy to say that our world is brighter, though not perfect, but we are happy. We enjoy our children. Aleya has recovered to a point where we can just rejoice with every new thing she does. Every new word, every new step, every new everything. We wish this never happened. I wish it would never happen to anyone else again. But life goes on, and we are so happy that ours is going on with Aleya. We would be broken and incomplete without her.