Intro --- very long

Mamamimi516

Hi Ladies! I've been lurking for awhile, and not sure if this is where I should be or not. I really love the support that you give one another, and I sometimes get really frustrated with well meaning friends that just don't seem to understand where I am coming from.

Here is my story...

My daughter, Sylvia was born full term, with no issues. I was induced a week early due to high blood pressure, and had a c-section, but that was it. Everything was fine until she was about 4.5 months old. She was incredibly fussy one morning, and started vomiting. I called the pedi and they said to just watch her. She seemed to be getting more agitated, and I realized that she was having seizures. A 911 call and ambulance ride later we were at Children's Hospital. My daughter had a very severe, spontaneous brain bleed. The entire center of her brain was filled with blood. We had no idea if she would make it, but it didn't look good. She had an EVD installed to relieve some of the pressure, and was very heavily medicated to prevent more seizures. During this time she stopped breathing and had to be intubated twice. This was clearly the worst time of my life. It then seemed that she could not see, she had days with very severe, uncontrolled movements that they thought would be permanent.

Amazingly, the movements stopped and one day she could see again. We were discharged from the hospital after almost a month, with very few answers. They really didn't have any idea what caused her bleeding, and couldn't get a clear picture because there was still a good amount of blood. Taking her home was terrifying. I was so grateful to have her, but so so scared of something happening again.

She is now 17 months old, and she is truly a miracle. She receives physical therapy for gross motor delays (she scoots on her bum, but won't crawl, pull up, or walk), she is going to be discharged from OT soon, and has vision therapy for nystagmus. Given the severity of her bleed, the doctors are amazed at where she is today, we all are!  Unfortunately, we still don't know what caused her bleed. She has had many MRIs, and they are being spaced farther and farther apart. The blood is gone, and nothing can be seen. This is GOOD because there are no problems to be seen, but so scary, because we still have no idea what happened and if it will happen again.

We just passed the anniversary of her going into the hospital, and it was a lot harder on me than I expected. I'm still struggling with this. I"m so very grateful for the outcome that we have, but still so terrified every day that something will happen again.  We had genetic testing done, because they believe it could have been caused by a cavernoma, and there are some hereditary conditions that can cause this. They all came back negative.  I am now expecting another baby, and I'm just so scared.  What if this happens again? What if there is something that I am doing while pregnant that caused Sylvia's problems, and what if I do it again this time?

 I'm sorry that this is so long. I felt like I needed to give the whole story. I just can't forget, and that seems to be what everyone expects me to do.  Is there anyone else with a child with anything similar? 

YaYa&RoRo

Hello! I lurk here and do not post much but I had to respond to you!  

My son was born full term, at 38 weeks after I was induced for his slow growth. He seemed fine when born, but 4 hours after birth he started having apnea spells. Noah was taken to the nicu and a ct scan revealed an extremely swollen brain, an EEG done later that night was abnormal and he was started on ant-seizure meds. Once the brain swelling went down his MRI and EEG normalized and we were discharged. He did have elevated Ammonia and lactic acid on day one of life but that normalized as well.

because he was born breathing... No one could tell us what happened. It is possible it was lack of oxygen sometime during or prior to labor, or we were told it could be. Metabolic disorder. We were sent to a geneticist when Noah was 5 months old, but he could not really find anything wrong and we were discharged with the assumption it was a transient insult during labor and delivery.

the thing is... I don't know what happened and will never know... It is all speculation. Our stories are different, but I know all too well that deep anxiety that comes with this kind of thing, my son will be 5 next month and is a typical little boy... But every time he gets sick or for example, a hernia was found at his 4 year well check last year... I freak thinking it is another symptom of some rare genetic disorder.

I did have a second son 2.5 yrs after my first ..... That pregnany was hard, and I had a Pitt in my stomache the entire time thinking the same thing would happen again. I didn't and I had a healthy delivery and baby... But it was a long scary 9 months!!!

your daughter is a miracle! Best wishes... No real advice other than, I understand!

 

Mrs.Rose

I also have an "unexplained" brain injury with DS#2.  I have a really similar story to YaYa.  We did all kinds of testing and found nothing.   It was SO hard for me to accept that we would never know, but time has helped a lot.  It has also helped me with the worry.  

After this happened to us, I had some PTSD over it (sounds kinda silly to type, but I was a mess).  I was anxious, and would melt down over the most random triggers.  It was horrible.  I talked to my doctor and got on some anti-depressants, which helped me a lot.

I think that a month in the hospital worrying about your baby can really mess with you and I think it sounds totally reasonable to feel the way you do.  Being pregnant is hard enough without the "innocence" that most people have about how things can go wrong with a child.  Have you talked to your OB? 

I hope you have an uneventful pregnancy and your little one continues to do well!   

 

Jcrab

What did the geneticist say? Often they might predict if something is likely to reoccur or not. Try not to play the "what if" game and blame yourself with your first daughter's health issues it won't change anything and I'm sure you took the best care of yourself and her that you could. Best wishes for a healthy pregnancy and baby!