None of the stories or pictures on these pages may be used without the express written permission of the Pediatric Stroke Network and/or the parents of these children. These stories are copyrighted by the intellectual property law. All stories are original submissions written by parents.

Sarah's Story



    I guess I should start at the beginning.  We moved our family to a new city and life was a little stressful so I didn't give much thought to the fact that my cycle was off.  I was in no way trying to have another baby because we have 7 boys between us already!  When I figured out what was going on we still hadn't gotten our Insurance switched over so I had to hold off on seeing a doctor.  I'm not a big fan of HMO's :-)

    I went to the hospital at 4 months because my water broke!  I fully expected to be told the baby was dead.  This has happened to me more times than I can stand.  You should have seen my face when I heard a heart beat and then movement on the monitor during a ultra sound.  I thought, this baby wants to be here!  I started seeing a doctor and in my 7th month I was sent for another ultra sound because my measurements had been getting shorter rather than longer.  I was told the baby had short femurs and her arms are short too but not as short as the legs, for her age.  Her head seemed to be the correct size though.  I asked what this could mean and was told it could mean she has Down Syndrome.

    We followed up with a level two ultra sound with a specialist and she thought Sarah was so small because of my health problems.  We went ahead and did the test for Down Syndrome just to be sure.  If Sarah didn't have Down Syndrome then the doctor wanted to deliver her within the week.  She only weighed around 2lbs! but if it was a problem with the placenta she wanted to get the baby out fast.  She told us if she had Down Syndrome then we need to realize that her placenta has it too and we would take her as far as we could.

    As with all of my children I was put on bed rest.  After my water broke I had a lot of bleeding for a couple months and I just couldn't believe she was still hanging on!  Sarah was born one month early and in fact has Down Syndrome.  This was just the beginning of our journey with our little Rocky!  I went into labor on the day we planned to do the C-Section, I could tell something was wrong and my doctor wasn't at the hospital yet.  I asked a stranger to go ahead because I didn't think we should waste any more time.

    She was bagged at birth because she wasn't breathing but once they got her breathing the doctor said she looked good.  She said, "if she wasn't so tiny I would put her in the well baby nursery."  I wish she hadn't told me that because it made it very hard to understand why they wanted to intubate Sarah.  She was little and had a hard start but she looked at me when I held her!  I know my daughter will be mentally retarded to some degree but when this baby looked and me I saw wisdom and intelligence.  My husband made me promise I wouldn't let them do this to her before he left the hospital because he didn't want to prolong any suffering.

    To make a  long story short they told us this wouldn't be the case she shouldn't need it for long but for some reason she didn't switch over her breathing pattern when she was born and needed some help.  Sarah was intubated a second time before all was said and done.  I thought she looked like a little faerie, the cutest one I had ever seen :-)  She only weighed 3lbs. 1oz. and was 15 inches long.  She stayed in the ICN for 5 weeks 2 days.  She wasn't expected to live a couple times but I don't think we realized that at the time.  My husband tells me I willed her to live and I think she did it all herself :-)  But hey, if he wants to tell me it was my love and care then I will take that too.

    She was tube fed until shortly before we brought her home.  When we brought Sarah home we new she had a hole in her heart and was still struggling to eat.  I had to feed her all the time because she would get so worn out just sucking. We had hoped the hole in her heart would close on it's own so she wouldn't have to go through open heart.  I took her to the hospital and they kept her for 3 days and told us she had a virus..haha  About a month later we took her  to see the heart doctor and found out Sarah had 3 defects-ASD, VSD, PDA and severe pulmonary hypertension! The doctor was surprised she had gained as much weight as she had to this point.  She told us it was a catch 22, Sarah would have had heart failure if it hadn't been for the pulmonary problem and the pulmonary problem was so severe because of all the heart  problems.

    Sarah was inches away from not being a candidate for surgery because the PH was so severe but they did a test the day before surgery using nitric oxide and it worked to lower the blood pressure so the surgery was a go.  At 4 and 1/2 months Sarah had open heart surgery.  One of the hardest things I've ever done was leaving that room knowing they would be stopping her heart. I have to tell you we didn't know what to expect with our little girl as far as what she would be capable of doing.  She was and is very strong though and was starting to get up on all 4, turning over, making baby sounds and smiling and laughing.  About a month after her surgery I realized she wasn't doing those things as well and by the time she was 6 months old she wasn't doing any of it most of the time.  I also noticed little jerks she would have just before falling asleep.

    She wasn't even holding her head up most of the time and she was sleeping a lot.  I took her to the doctor and we had to see someone she had never seen before.  This lady made me very angry on every level you can think of.  After I told her Sarah's history she told me "she looks like a normal Down Syndrome baby". There is no such thing!  We are told from day one that you just don't know what each child will do. I took Sarah to the Down Syndrome clinic the next day and told them my concerns.  She had an EEG and this confirmed Infantile Seizures.  We started Sarah on ACTH gel that day and had to give her a shot a day for the next 8 weeks.

    Later an MRI confirmed she had a bleed and they diagnosed her with Periventricular Leukomalacia (PVL)  Again there is no Normal here, it is a wait and see game.  It looks like she is having seizures again but I am very happy to report that Sarah came back from the seizures, she is trying to talk, she says hi dad, om for mom :-) sounds out I love you and makes a lot of other sounds that we can't always make out.  She laughs and smiles again too!

    She has left side hemipeligia but with therapy she's doing well.  I can't set her down and walk away from her but she will sit and play with a toy for up to 5 minutes now!  She still isn't crawling but I think she will.  She will soon have DAFO's for her legs because she loves to lock her knees when we stand her up and a little hand brace to keep her left hand opened.

    She has started feeding herself finger foods and sometimes she even tries her left hand.  We are learning simple sign because a lot of kids with Down Syndrome can't talk or have a hard time and this will help her and us. Sarah is 15 months old now and going strong, her heart and lungs are good.  I have dreams of one day watching her play soccer.  The other dreams...well let's just say that's what dreams are for :-)

    As I said in the beginning I wasn't planning to have another child but I wouldn't trade this little angel for anything in the world.  She has made the world a much larger and warmer place to be in.  I now know what it is to witness a miracle every day and even though our lives are very hard in many ways I wish everyone could be touched by an angel.



Back to CJ's Playground

Back to PSN

Pediatric Stroke Network 1999-2002
All Rights Reserved.  Unauthorized use prohibited.  

The Pediatric Stroke Network copyright materials can not be copied in whole or in part by any person, organization or corporation other than PSN, it's divisions and units without the prior written permission of the Legal Department at the Pediatric Stroke Network.

PSN founded by Rachael Hoffman 1999

If you have questions or comments regarding this website, email the webmaster .


This page last updated 12/31/2001