My Little girl Evie is 10 weeks old. So far she has been in hospital seven weeks of her life and the docters still cannot give me or my partner answers. My pregnancy was completley normal that is until i came to give birth to my little princess. I was induced two days before my due date as my waters had broke, due to risk of infection i was then told to go to the hospital, where they broke my back waters and gave me a drip to bring labour on. I was in labour 9 hours, having all kinds of pain relief. After having the epidural i began to push at 9cm dilated. Unfortunatly Evie's shoulders got stuck. The midwife then pressed the emergancy button and lots of midwifes and docters tried getting my little princess out. When she finally came she stopped breathing. She was then resusitated by a bag and mask and finally we heard our little girl cry. I was so happy! i then spent the night in hospital because of being induced but then got sent home. For the first three weeks, we were constantly seeing midwifes because Evie wasnt putting any weight on and would not feed. Everytime midwifes just said "Try changing her milk", "Try using different bottles". We knew something was wrong with our daughter so we went to the hospital. There we waited 6 hours until we could see a docter who listened to her heart said "She has a heart murmer, you will get a letter through the post with a date of a heart scan, should be in a month", with that she sent us away. That week our daughters feeding deteriated to the point she was drinking half an ounce every 4 hours, even then we had to wake her for her feeds. She was breathless after sucking for ten seconds on the bottle and we knew that something was seriously wrong with her. We then went back to the hospital and refused to be sent home, the reaction this time we got from docters was very different from the first time we went. A different docter confirmed she had a loud heart murmer and would explain why she isnt feeding and her breathlessness. She sent us to a different hospital were they did a heart scan and told us our little Evie had a HUGE open heart duct. The hospital then got suspended from doing heart surgery so we had to wait again to be moved to a different hospital. During which Evie became worse and was put on a high dependancy unit where they monitored her. She then was taken to have her heart surgery to close the duct, the consultants suspected she also had co arctation of the aorta. After the operation the surgeon told us there was no narrowing of the aorta as suspected and the huge duct had been closed. The operation was a success! That night on intensive care Evie had a seizure. They did an MRI scan of her brain and an EEG. The neurologist then told us our princess had severe brain damage, which they believed happened at birth. The parts that are affected are the parts that control: sight and movement to the leftside of the body. We were then sent back to Leeds hospital were they did all kinds of brain scans. It was confirmed again was were was told except the brain damage had got worse, and had spread to the part of the brain that controls her right handside movement. Her brain vessels are very narrow and havent developed as they should have. They suspect a blood clot in her vessels caused the stroke. They have told us they may never find out why this happened or when. Some of the neurologists have never even seen our little girls symptoms. Theyve told us she could walk with a limp or slight stiffness or paralysis of her body. Her sight could range from not being able to work out shapes or colours to complete blindness. To what extend this will affect her is unknown. All we know is that this is a waiting game until she grows and develops. She is now still in Leeds hospital were they have done blood tests for genetic causes. She doesnt keep milk down, which has made her a static weight for weeks. She is due an operation in 2 weeks for her stomach to be tied and a gastrostomy into her gut to stop her bad reflux. She is on epilepsy drugs to prevent her fits and asprin to thin her blood to prevent another stroke. Another stroke would either turn her into im afraid to say "cabbage" in which she will be paralysed in a wheelchair, unable to see, hear, talk etc or it will kill her. The severity of the damage is plain to see on her scans and we hope Evie will proove docters wrong and develop like any other little baby girl. Her reaching her milestones like laughing, smiling, grabbing etc will mean more to us than anything in the world. All we want is someone to show us how our little girl will be in ten years but that is the impossible. At ten weeks old our princess has had major heart surgery, strokes and a stomach operation. No matter what the future we love our little girl more than anything and will still be doing all the things you do with children like taking themto the Zoo, the park, swimming etc. I just wanted to tell my story to see if someone else has had the same. Thank You.t she was ok,
Hi, I must say that what you've gone through is absolutely horrible. I would like to say I can't imagine it, but I can. It's all too real to me also.
I'm 16. I have epilepsy and quite frankly, I got on here to troll all the people who thought they were dying because they felt dizzy or wanted some dire diagnosis. I have good reasons for this trolling, trust me. That's a whole other story. Then I saw this post...
In August of 2010, my family (mom, younger sister) and I were doing foster care. We got a call to go to the hospital to pick a little girl up. We picked her up and she was the most beautiful thing, her name is Sophia. We took her home thinking she was only a temporary placement.
3 weeks later, Sophia starts having symptoms including complete loss of muscle coordination. She would also stop breathing. There is a long history of epilepsy and other brain ailments in my family, so my mother automatically took her to our nearest Children's hospital. It turned out that she was having seizures, had brain damage, and at that time the doctor told us that she would not live until she was 2. She also has allergies to both milk and soy, as well as very severe reflux and a hole in her heart. (The hole in her heart is minor and has not caused any problems yet. :) )
Sophia's seizures, brain damage, and gastro problems were all caused by her mother doing drugs and alcohol throughout her pregnancy. K2, meth, coke, weed, heroin, EVERYTHING you can think of. Don't hold back, because that's how her mom tried to abort her.
After about a month, we moved from that hospital to another, more renowned Children's hospital because the care I needed was there. (Only 1 doc at the other hospital.... too much space in bw appts. whatever). We both have the same neurologist at this hospital and he is amazing! But, he made it very evident that Sophia's brain damage is very, very significant. The possibility of white matter brain disease has been thrown around, and is still possible but unlikely. However, her neuro has made it obvious to us that she is going to have severe problems. There is a chance she will not lead a fufilling life, there is a chance she will be fine, and there is a chance she could pass away at a young age.
As of about a year and a half ago to as recent as 5 or so months ago, she was having seizures anywhere from once a day to possibly 20 times a day. Her seizures had changed from these "drop" seizures to pure staring (absence) seizures. That means they're even harder to catch. We also recently found out that she has a lesion on the her hypothalamus. I suppose this is a very grave diagnosis that our neuro can't fully predict or explain, or maybe just doesn't want to get that far ahead yet. That, certainly, is going to come soon enough...
She was late with all of her milestones, very late. But when she had them, it was the most amazing experience.
She is now 21? months old. As I speak, she is sitting in my living room with a sweaty head and her face covered in dirt from playing outside all day. She is such an ornery little child. She runs, jumps (pretty high!), plays with her toys, and even does somersaults! She is the happiest child I have ever met. I'll admit, they're are some differences that you'll notice, but only if you know her very well and pay close attention. One that's pretty obvious is that she should be talking more. She has really started a lot in the past month, but for about 6 months or so it was pure babble. Nothing but babble. Now, she has all of a sudden started to form simple sentences! She will point to you or say your name and tell you where to sit. She gives the new puppy commands and he actually listens to her. She has amazing manners. And she loves football. She laughs and jumps whenever they do a closeup of someone getting tackled. And she says football whenever I turn to ESPN. :)
Honestly, even the most optimistic people can't believe what she is doing today. She is behind, but it took a lot to get where she is. For probably 8 months, Sophia has intensive physical, occupational, and speech therapy multiple times a week. About 4 of those months we actually relocated closer to our hospital for both her therapies and my therapies. The other 4 were A LOT of driving as well as supplementing with the same therapies from organizations where we live. In addition to that, we work constantly with her. Especially my mom and I. My mom is actually a special ed teacher, so that is a blessing! We are constantly reading to her, teaching her how to play (yes, she has to be taught how to play with her toys), doing the exercises designated by her therapists, and overall just trying to stimulate her. My mom is convinced that you are able to retrain the brain. So much of her brain is dead or damaged that she should have barely sufficient motor skills and downright horrible, if any, thinking or higher level thinking and communicating skills. Based on where she is now, I think we have. And we will never give up.
Despite her fallbacks, Sophia is absolutely wonderful. Like I said, if you just saw her playing in the park you wouldn't know a thing was wrong with her. She is so happy, ornery, and she really is a pretty smart cookie. She is a slow learner when you try to teach her things. But when she sees things being done and tries them on her own a few times on her own, she has them! For example, it took her 2 months to teach her that cows go moo. (Now she can't stop moo-ing!) But, I was babysitting her and the craziest four year old you will ever meet the other day and he was playing with his dad's tools. For the record, these were real tools and I didn't think he should have them as he is pretty violent because he has come after me with a knife... but his mom said he could. lol. Anyways, he had a screwdriver and was "pretending" to try and take the door of their tv armoir off. He invited Sophia over to do it. I thought "Oh, they're just pretending. As long as they don't poke each other in the eye they'll be fine." So i just watched what they were doing from across the room, not aware that they were actually taking the door off! Yes, the BOTH took the door off. Sophia now has a vague knowledge of how to work a hammer and a screwdriver, sort of. This isn't a good example, but I thought it was funny.
Anyways, there is a good chance everything will be ok. There is a good chance it might not. I have lots of advice to you, but my main note is this: What does good mean? When is everything ok? If Evie is absolutely fine with no problems and you can completely put that in your past, is that good? Or is it good when she is functioning pretty well, has some significant delays, and will need therapy for the rest of her life? What you need to define is quality of life. Every day is good when they're the better or the same than the last. Things are what they are and you can't worry over outcomes all day. And our story isn't some story where now everything is all good. The other day she had atleast 10 seizures and wasn't eating. Every time something like that happens we fear the worst. Our neuro keeps telling us to wait for something, he doesn't know exactly what yet but he has a grave idea. If/when it comes there is a strong possibility we will she a sharp decline in motor, communication, and thinking skills as a result of a sharp increase in seizure activity. Everyday we fear that the thing we're waiting for will happen that day. You celebrate every birthday, you make every day amazing. Because the fact is, they could be absolutely fine today. Or, they could die in a meteor crash tomorrow. Or they could be seizuring a ton for a few days, and then they'll be ok. Or, what's been lurking around the corner could come true. It really puts things in perspective. You live every day like its your last and you don't worry, about anything!!!! Anything. You never know what's going to happen, whether it be a miracle or utter devastation.
Another piece of advice would be to get to the best children's hospital you can find. Of course, Leeds (which I'm assuming is local) is probably very good, but Children's are much better for this sort of thing. They are constantly innovating these sort of things. They also treat the kids nicer and it's more kids centered. TRUST me on that one. It is a world of difference in the care of your child.If you are willing to travel long distances, go to the leading hospital for her disorders. Just google it. Some big ones for pediatric neurology would be Cleveland Clinic, Philly Childrens, Boston Childrens, and Cincinnati Childrens. I hope you're on the east coast. Go to U.S. News. They are reliable.
Also, if you need somewhere to stay, always check out the Ronald McDonald House. You will find them around all Children's hospitals. There are some requirements, which some people abuse, but it is a really good place. Just be sure to ask if your room has a history of bedbugs...
I can't guarantee you that everything will be fine. This is simply my story that is still continuing... I don't know what will happen tomorrow. It has been such a long journey and there is so much I didn't have time to include, but the fact is you do what is best for your child. Fight for her, encourage her, and take what doctors have to say in stride. A diagnosis doesn't define Evie, it defines her body. Never let her feel bad about what she has. As someone with epilepsy, she will probably be so embarrassed about her seizures. Never let her pity herself. Never let fear and worry overcome you, although I know it will. I wish the very best of luck to your family. I will be consistently praying for you. :)