“My Life Turned Upside Down”, cont’d

In Uncategorized on April 27, 2011 at 11:21 am

So back to the hospital we went, not ever knowing what to expect when we got there.  A constant state of unknown.  Not a good place for a control type person like myself.  By the time we arrived, they had finished an array of testing including the spinal tap.  They explained to us that they were ruling out some possible causes for my daughter’s decline, internal bleeding, meningitis, and so many more that I can’t even remember.  What they did know at this point was that after carefully examining smears of her blood, she had distorted and irregular shaped red blood cells causing the anemia.  Without getting too technical, basically the spleen acts as a “filter”, treating these cells as abnormal or old and breaks them down, causing the red blood cell count to drop.  Since red blood cells carry oxygen through the body it also drops oxygen saturation.  Frightning.

They explained that they would have to keep monitoring her counts closely, and that a blood transfusion may be needed.  There were two possible causes of this condition;  Infantile Pyknocytosis which is a rare form of hemolytic anemia in newborns.  The cause of this condition is unknown, and usually resolves on it’s own around 4-6 months of age.  Or, Spherocytosis, a more serious  life-long disease of the blood, in which red blood cells are shaped like spheres causing anemia, and at times requiring transfusions.  It would take a year for us to get the final diagnosis of Infantile Pyknocytosis.  A very long year.

In the meantime, my husband and I underwent genetic testing, and keeping vigil at the hospital.  After a few days, she did indeed need to have a blood transfusion.  Of course my worries multiplied with this news, even though I knew she needed it to survive.  What if she contracted something from the blood?  We’ve all seen the sad stories on T.V.  My head was a constant tornado of scenarios and “what if’s?”.  I again had to place my trust, and my daughter, in the hands of her re-assuring team of doctors.  That’s right, I said team.  This condition brought so many doctors to look at her case, not to mention the crowd of students and interns that usually followed them.  All asking questions, wanting to learn.

She received the transfusion, and started to improve dramatically.  She “pinked” up, and was getting stronger.  Now we had to wait and see if her new batch of red blood cells level would stabilize.  After a week, we were headed home.  I was elated and almost paralized with fear at the same time.  Even though I hated leaving her in the hospital every day, at least I knew if anything happened, she was there, with the best nurses and doctors at her side the second she needed anything.  She was hooked to monitors telling you at a glance what her heart rate, and oxygen levels were.  How would I know all of this at home?  How would I be able to sleep without worrying that something would happen while she was sleeping.  Fear, fear fear.  The symptoms that I was told to look out for didn’t help ease my fear at all.  I had to watch her to see if she started to seem lethargic and sleepy.  Aren’t all newborns sleepy?!?!  Check the whites of her eyes for yellowing, again, not easy on a newborn.  Check fingernails and palms of the hand for pinkness.  So tricky with a baby that isn’t able to communicate.  How was I going to do this?

We also had to go get her blood drawn regularly.  For the first few days, everyday.  Then every other, then once a week, etc.  Her little tiny heels had so many cuts in them.  You can still see the scars today.  I’m so grateful to one technician at the lab we went to.  Drawing blood from an infant is somewhat of an art, and she was the best.  So calm, and quick.  When she would see me coming, exhausted with my daughter and toddler son, she would drop what she was doing and help me.  If someone else working started to take us to the back, she would say, “It’s o.k., I got this one.”  And I would thank God every time I saw her face.  Then I would go back home and wait on pins and needles for the Doctor to call with the results.  Every day.

After only a few days at home, things seemed to be going o.k.  I was starting to get into the routine of it all.  Then, I got the call.  “We have your daughter’s blood count for today, and it seems she’s going to need a little more “hand-holding” than we thought.  She needs another transfusion right away.  Come back to the hospital and go to the emergency room.  We’ll work on getting her admitted.  Hopefully this will be the last one.”  All I could say was o.k.  I felt like I’d been hit by a truck again.  My son was calling for my attention, and the doctor was still on the line.  He was trying to keep me calm even though I wasn’t saying anything.  “Everything will be fine”  he kept saying.  Fine?!  How is everything going to be fine?  How did this happen without me noticing?  She didn’t seem to show any of the signs I was told to look out for.    We are headed back to the hospital.

I hung up the phone, and tried to concentrate, all the while my son is pulling at me, “Mommy, Mommy!”  My throat was hard, swallowing back tears as I called my husband at work.  He was on his way home immediatley.  My next call, my Mom of course.  She was at work as well.  Now the tears can’t be held back anymore, and all I remember saying to her was ” Mom, I’m so scared!  I’m so scared! We have to go back.  I’m so scared.”  I can’t even remember who came to take care of my son while we left.

The ride to the hospital was silent.  I sat in the back with my daughter, staring and quietly crying…again.  We arrived and went to the emergency room as directed.  Even though they knew we were coming, we wound up having to wait for 7 1/2 hours until they had a place for us. They were all very kind, but all I kept thinking is, my baby needs blood and we’re just sitting here!!  They finally put us back in the Neonatal Intensive Care Unit, for which I was grateful.  We knew all of the staff there already.  They were all surprised to see us again.  We stayed while she received the transfusion, it was very late at night and we didn’t leave until the early morning hours.  It was hard to leave her again, but we had to get home to my son.

Once she stabilized again, she was discharged.  Home again, and more of the same.  Blood draws, waiting for results, obsessive checking of her skin color, fingernails, eyes.  I would go into a silent panic anytime she seemed to sleep a little longer than her usual routine.  One morning, I couldn’t wake her up.  I tried to remain calm as I did everything I could think of to get her awake, diaper change, clothing change, everything.  I couldn’t get her to become alert, and she had even skipped a feeding.  We called the doctor right away and they sent us to our local hospital for blood work.  Her levels came back slightly low, but they weren’t concerned.  Turns out she was just having one of those sleepy infant days.   Day in and day out this was my life.  I don’t think I slept soundly at all in that first year of her life.  I spent many nights laying in bed staring into her bassinette.  I would reach in an touch her, just because.  I lived in a kind of daze most of the time.  My mind never really 100 % in the moment.  When the blood draws slowed down to once a month, and longer we would have to go back to C.H.O.P. to have it done.  They would take a little more than when her heel would be pricked, because they would also look at it under the microscope for abnormal cells.  I dreaded it.  Everytime we went, it took me right back to the time we spent there.  All the worries were fresh on the surface again.  Not to mention, they would draw from her arm now.  The technicians were wonderful, gifted people.  But, that doesn’t make it any easier to hold your screaming child still in your lap while they find a vein.  My husband was amazingly strong and positive through everything, but he came in the room with me the first time they did that, and he had to leave.  He never came in the room with me again.  It was too hard, especially the older she got.  She would be smiling and happy one minute, and then look at me screaming with an expression of “why Mommy?” on her little face.  She would try to turn and put her arms around my neck, but I had to hold her down to keep her arm still.  I would try to hum “You Are My Sunshine” in her ear to calm her.

I also have to mention that the Hematology department shared a floor with the Cancer department.  I can’t tell you how my heart ached seeing the other families there for blood tests, whose situations were so much more grave than ours.  What results would they be getting from their child’s blood work?  Heartbreaking.  My husband and I would come home completely wiped out.

As time went on it was looking more and more like it was resolving on it’s own.  A few weeks before her first birthday we finally got the official diagnosis of Infantile Pyknocytosis.  Hard to express what that day felt like.  Of course complete joy, but I have to say it was a cautious joy.  I wanted to hear that this would never re-occur, but I quickly learned that never is a word that doctors rarely use.  Since the cause of this condition is unknown, they won’t say that it will never happen again, believe me I tried to get them to say it.  What they did say is that they would be completely shocked to see a re-occurance, and that they hoped to never have to see her again.  But of course if we ever noticed any symptoms, we should have her checked.  There’s those pesky, vague symptoms again!  If you know me, you might still catch me looking at her fingers and eyes closely.  Whether this is just habit or something else, I don’t know, but I catch myself doing it.

The most important thing about this story is that my daughter is now a healthy, active little girl.  She’ll be five years old in two weeks.  Time seems to have gone by in the blink of an eye.  She is beautiful in every way.  She’s shy, but don’t let that fool you!  She is stronger and smarter than I’ll ever be, which I believe is what got her through that whole ordeal.  She was sent to me for a reason…many reasons, and she makes me a better person every day.  I am eternally grateful.

My hope is that by my sharing this, I may be able to help someone else who may be experiencing a similar situation.  Even if it’s only by acknowledging the multitude of emotions that one may experience in these types of situations, thereby validating them in some small way.  Sometimes you can only process them all after it’s  over.  I hope they are able to find their own peace.

I also have to mention how grateful I am to the amazing people in the nursing and medical field.  I don’t know how they do it on a daily basis, and I have the greatest respect and admiration for them all.  They are angels to me.  I made a promise to myself that someday when my children are a little older, I will go back to the hospital to volunteer.  It is a promise I am determined to keep.

This series of posts was difficult for me to write, but I’m so glad that I did.  I’ve given it all it’s own place.  Now, it’s time to move on, clear away the rest of the daze that was remaining and become truly present again.  Back to living, and soaking in every moment with my “little sunshine”!

  1. Great job with these posts. You have such talent!
    While reading…..
    I feel as though I am there with you and
    I am taken back to my own silent tears…worry…fear.

    I’m so glad that your daughter is healthy and happy.

  2. Meg, you are an amazing writer!! You are a stronger person than you think!! Thanks for sharing this with all of us!! love ya!!

  3. What a story. I have only dealt with short term medical crisis but this takes everything a person has. I am glad to hear it is five years later and your daughter is thriving.

  4. We went through this with all 3 of our kids. It was a nightmare of blood draws hospital visits and doctor visits. Thank you for sharing your story!

    • Wow, one was hard enough, I can’t imagine going through it with three. Thank you for taking the time to read. I hope all of your children are doing well:)

  5. I am passing through the same experience. In effect I could have written the intro part of this article myself! My daughter, who was born on 02/05/2014 has the same symptoms as your daughter … after two days of life she stayed in NICU for 10 days due to hyperbilirubinemia and after a month she had her first blood transfusion. We go to hospital to check her hb every Tuesday with no end in sight. No one ever mentioned pyknocytosis to us – just spherocytosis. However an EMA binding test for spherocytosis resulted borderline, so we are still unaware why she is anaemic (although not in need of more transfusions for now). Hematologists seem baffled. How I wish it will be transient! This article filled me with courage and gave me some hope. Thanks.

    • I am so glad my experience has given you some courage, and most of all hope. It is such a difficult time I know. You will make it! One day at a time. I learned so many life lessons through that experience that I carry with me every day. I will keep you and your daughter in my thoughts, and send to you strength and positivity.

  6. Thank you so much. I appreciate. I know that one cannot compare medical situations like this because all children are different, but can I kindly ask you some questions? Did her hb remain stable after the second transfusion or did it go up and down for a while? What was her average hb after the second transfusion? Did they check her for spherocytosis? And has she ever been jaundiced? Thanks. Wishing you and your family lots of health and happiness. Hugs and kisses.

    • Her levels fluctuated slightly after the second transfusion, but never to the point that we needed another one. It’s hard to believe but she is eight years old now! It seems like yesterday I was going through this, and at the same time feels like a lifetime ago. I don’t remember her exact numbers anymore which seems strange because I felt like my life was ruled by those numbers at that time. They regularly checked her blood for spherosites. She always had some, but they eventually decreased more and more until we got the ‘all clear’ around her first birthday. She never became jaundiced again after infancy. I will say her coloring was “off” for the first few months of her life until things started to resolve.
      I am forever grateful that we live near the Children’s Hospital of Philadelphia, one of the best in the country. I can’t say enough about how wonderful they were there. I don’t know where you are located, but if I were you, I would consider talking to your doctors about reaching out to them.
      If there is anything I can help you work through, I’m glad to help:)

      • Thanks a lot for your reply. So kind of you. I live in Malta, a small island in Europe. Well, the population of the island is only 400,000; so you can imagine how many years have to pass for our doctors to encounter these rare situations. Thanking you one more time. Much appreciated.

      • My pleasure. Best of luck to you.

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