A little awareness on Congenital Heart defects in babies and kids… and my daughters story.

    Hi everyone!  This post is going to be long and hard to type, but I want to share this to help someone out there that thinks something is wrong with their baby…   I honestly don’t know where to start, so I’ll just start at the beginning of my beautiful daughter Sarah’s birth.  About 6 years ago I had a hard pregnancy and long labor.  It seemed as though my beautiful baby wasn’t ready to be brought into the world  yet… and maybe that was the case.  My firstborn was born a natural birth and came when she was ready… however, with Sarah I decided to have her induced.  I honestly can’t pinpoint  why I wanted to, but I guess the prospect of being able to have her when I was ready seemed like a good idea.
After being in labor for about 8 or 9 hours and pushing unsuccessfully, the doctor decided to do a c-section.  I won’t lie, I was very scared.  They kept giving more and more drugs to calm me down and literally had to strap me down.  After I was calm they got her out and I didn’t hear her cry….  I started to panic again and screamed why isn’t she crying?  Finally after a bit she started to cry a little bit.  Once she really started to cry they laid her in my arms and I kissed her little round cheek…. She was beautiful in every way.
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Fast forward to a couple of months later…
Something in every cell of my body told me something was wrong.  She wouldn’t stop crying, she wouldn’t finish her bottles, and she wouldn’t put on weight.  I took her to the doctor and everything looked and sounded fine.  Fast forward to about 4 months later and I still had that nagging suspicion that something was off… Something was wrong with my baby.  She wouldn’t roll, she couldn’t sit up, and she was sweating profusely when she would drink her bottles.  Not to mention she wouldn’t stop crying and her feet and hands were swollen.  I called her doctors office and told the nurse on the phone that something was very wrong.  I told her my daughters symptoms and could sense alarm in her voice as she asked me questions.  After she told the doctor what I told her, they said I needed to bring her in immediately.  I didn’t hesitate, I drove swiftly to their office and the doctor there immediately listened to her heart.  She looked at me with a frown and said with a bit of concern I needed to take her to the hospital for a echo cardiogram.
I then trekked over to the hospital and had the echo done.  I kept asking the tech what he saw, but he wouldn’t tell me.  He just kept saying that he couldn’t tell me, only the doctor could.  After they were finished, they left the room and came back with Sarah’s pediatrician.  Her doctor looked at me and told me that she had to go to the emergency room, and that she was in heart failure.  Her doctor then hugged me as I cried.  They brought a gurney in the room and rolled her to the E.R.  I immediately broke down as the doctor told me what it meant and what was wrong.  Sarah reached for me as they rolled her away and started to cry.  I thought that congestive heart failure meant she was dying right then and there and started to panic.  I rushed outside to my husband while he was waiting in the vehicle with our oldest daughter.
I could barely talk, I could barely see from my tears… he got out and hugged me asking where Sarah was and asking what’s wrong.  I told him what the doctors told me and he looked shocked and sad.  We hugged again and headed back inside the hospital to be with Sarah.  I could hear her cry echo through the hallways and started to cry again as I saw the nurses attempt to put an I.V. into her little arm.  As soon as she saw me, her crying intensified.  I sat her in my lap while they worked on her, and then one of the staff told me that they were going to take her to Kosair Children’s Hospital in Louisville on their helicopter.  I asked why, and they said that the bigger hospitals were better to care for babies.
There was some bad weather headed that way so they decided to send her via ambulance to Kentucky Children’s Hospital.  Once we got there, they immediately put her in ICU.  I was still clueless what the Echo showed and really wanted some answers.  While we were there they done a biopsy of her heart, and told me that she had severe tachycardia’s  and arrhythmia’s.  Also, she had multiple holes in her little heart and that was why she wasn’t hitting her milestones.  They sent her biopsy off for testing and prescribed her some medicines.  I think we were at Lexington for about 2 weeks while they monitored her on the medicines.  We were finally able to go home and await the test results as to why she had these problems arise.  She had a ton of medicines, all for different problems and to control her issues.  The one in particular that sent her spiraling and ultimately nearly killed her was Flecainide.  My husband and I was about to head out and I gave her her usual doses of medicines, but somehow I had given her a double dose of Flecainide.  It wasn’t until about 2 hours later I had realized the mistake I had made.  I panicked.  I cried.  I tried to force her to throw up by sticking my finger down her throat.  I nearly lost my finger to her biting me though.  After unsuccessful attempts at getting her to vomit up the medicine, I called multiple pharmacies.  I told them all what happened and asked if everything would be fine and they said yes. I then called a doctor up in Lexington and she gave me the same answer and said at most, Sarah would be sleepy.  Sarah was sleepy all right… I couldn’t wake her.  She started to vomit everywhere after 2 hours later and her mouth turned blue.  Her skin was ice cold, and she had a seizure in my arms.  My husband and I rushed to the vehicle and rushed her our local hospital and I told them what had happened.  I also informed them that in Lexington they told me she would be fine.  If I had known any of this would have happened I would’ve taken her sooner and ignored the Dr telling me she would be fine.
They took her temperature when we got there, and her internal temperature was 94 degrees.  She was dying in my arms.  They put warm blankets around her, and called Lexington again.  This time we flew up there in the helicopter.  They rushed her to the children’s ICU and immediately started working on her.  While they worked on her they had me leave the room and kept me in a room to wait on updates.  They came in and informed me that she had multiple seizures due to lack of blood to her brain.  Her heart was barely beating because of the Flecainide.  About an hour later a nurse took me to see her, and they were doing chest compression’s on her.  I heard the doctor yell at the nurse to get me out of the room.  I immediately broke down.  I thought she was going to die.  Another hour later a couple of pediatric cardiologists came in the room I was waiting in and told me that Sarah had a 10% chance of living through the night, and that they had her results of her biopsy.  The biopsy revealed that her mitochondria were abnormal in her heart.  They put her on ECMO (extracorporeal membrane oxygenation) so they could get oxygen in her blood.  This was how they saved her life, and almost ended it.
I was terrified once they had her hooked all up to it.  They had put tubes directly into her heart taking her blood out of her, and then running the blood through a machine and back into her body.  She was also on a bunch of blood thinners.  It was so hard for me to see her there in a medical induced coma… Would she remember me when she woke up?  Would she still call me mama?  I held her little hand and cried… I felt so helpless.  There was nothing I could do but just be by her side and talk to her.  Fast forward to about a week and a half later and she was getting to come off of ECMO, and they had put in a pacemaker. As soon as she woke up to me standing by her, she said, “Dada” and held onto my finger.  ( That was the only word she knew at the time.)I smiled.  She still remembered me.  I cried with joy and kissed her forehead.  The next day though… something was wrong.  I stayed the night that night with my husband at the Ronald McDonald house to get rest (I was mentally and physically exhausted.) and the next morning we got a phone call from the nurses saying we had to sign some papers for a procedure.  They didn’t tell me anything more, they just said we needed to be there ASAP.  We went there and they sat us back in the conference room saying that Sarah had a stroke that morning.  I broke down again.  They told us that she had to have immediate surgery to save her life and that a part of her brain was dying.  I couldn’t believe that this was happening to us… and that I may lose my baby again.  I didn’t know what she would be like when they were done… Would this alter her personality?  Would she remember me?  What will she be like when she gets older?  Will she struggle in school?  Her surgery went fast.  I was shocked at how fast they got the clot out and saved her.  My husband and I thanked the surgeons and we wanted to see her.  Once they got her set up in the room, she looked pitiful.  They had staples holding her head together, and it was all swollen.  I was terrified.  Fast forward again to two weeks later and Sarah was still asleep.  They intentionally kept her sedated so she would heal.  I was at the Ronald McDonald house with my husband and we got a call that I needed to come to the hospital that morning.  I went there to the room, and the doctor sat me down and told me that there was nothing more they could do for Sarah.  They told me not to do chest compression’s if she stops breathing, and to let her go.  I broke down, and was in disbelief.  They had given up on her.  About a week or two later, she was awake and was able to try and talk.  She had physical therapy to help her regain use of her hands and then was sent home on Hospice.
At the time I thought Hospice was home health care where they took care of her while she healed, but I was wrong.  Hospice was for dying people, and to keep them out of pain while they passed away.  I still couldn’t believe any of this was happening.  My poor baby was going to die. (Or so I thought.)  We called funeral homes getting prices.  That was the hardest thing to ever do.  After about 3 months, Sarah was still alive, and actually thriving.  She was smiling, laughing at her big sister, and trying to grab toys in her crib.  That’s when I had hope that she was going to make it.  Another few weeks went by, and she had her first birthday.  I was very emotional.  She had defied the doctors so far, and made it to her 1st birthday.  Another couple of months went by and we decided to move.  We needed a new start, a new home, a place to start new memories.  We moved to an apartment in town, and things looked up from there.
Hospice started to come by less and less and eventually about a year later she was discharged from them.  She had hit her 2nd birthday, and was doing amazing.  That was when we decided to get a second opinion from doctors in Louisville on Sarah.  The doctors in Lexington didn’t want to repair her heart, they wanted to use medicine to fix problems.  I knew her issues could be fixed after doing research.  As much as I hated her going through surgeries, I knew they would make her heart better.  The pediatric cardiologists in Louisville were very optimistic about her, and were amazed at what she had been through.  They set her up with an amazing Echocardiologist named Dr. Johnsrude.  He has just been amazing!  The other doctor they put her with was Dr. Elbl so he could help the structure of her heart.  Once we went there a few times and they done some tests, they all agreed in a meeting to repair her heart.  We set the date and took her there for the surgery.  The surgeons repaired the holes in her heart, and Dr. Johnsrude froze the spot in her heart that was causing the irregular and fast heart beats.  When she woke up from surgery, she was in pain, but she was giving us high fives.  She was a little trooper.
Fast forward again to today.  We celebrated her 6th birthday in December and she’s now in Kindergarten.  The doctors in Lexington would be amazed to see her the way she is now.  We went to the cardiologist about a month ago, and they said she’s doing so well, that she doesn’t need any heart medicines anymore.  They’re even talking like they’re going to remove her pacemaker because she’s hardly using it.  Just recently we found out from some records that Lexington had prescribed her too high of a dose of Flecainide and that contributed to her spiraling when she was about 9 months old.  I guess I typed all of this so you all can see that if a doctor gives you, your child, or loved one a bad prognosis, it’s not always true.  Get multiple opinions.  And if you have a feeling that something just isn’t right with your baby/child, don’t wait to see the doctor.  The sooner you see them, the sooner you could very well save your child’s life.  If you’ve made it this far, then thank you for reading.  If any one reading this has questions about my daughters experience, and if your child is having issues, just contact me and ask.  If your baby/child is having any of the symptoms that I mentioned above, and your baby isn’t hitting it’s milestones, then something is wrong.  You need to get to the doctor and troubleshoot what it is.  I didn’t put any pictures of her in the hospital, because they’re too hard to look at.  Thank you all again for taking your time to read this post, and I hope it helps someone out there that has been giving a bleak outlook for your child.  There is hope, don’t let that light go out.
Sarah and her big sis, Scarlett.

Sarah at the dinosaur park last year!


2 thoughts on “A little awareness on Congenital Heart defects in babies and kids… and my daughters story.

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