Thursday, August 7, 2008

Because you don't get enough medical jargon out of me regarding my OWN family...

So, Mindi called on her way out of the cardiologist office at St. Louis Children's today. Hannah had her echo today with the pediatric cardiologist (pc for future reference in this post). Her echo was normal. They almost let them go. The pc said, let's do a ECG (electrocardiogram) before you go. They did. It was not normal. Here is what they found.



WHAT IT IS:
Hannah has a condition called Wolff-Parkinson-White (WPW). It is a condition in the heart where-in an additional electrical pathway exists between the upper and lower chambers. Many people with WPW have no issues or problems. However, WPW can set people into different conditions called arrhythmias. The most common of these caused in children by WPW is called Supraventricular tachycardia (SVT). This is a condition in which that additional pathway/conductor sends an extra signal to the between the chambers of the heart causing an extra beat and keeps doing it until basically the heart is racing extremely fast. It has to be stopped by external measures or it will continue and get worse. WPW can also cause Atrial Fibrillation in more extreme cases. Hannah's ECG at the hospital last Thursday night also showed this condition. However, they do not think she was in SVT that night. Personally, that surprises me, but just because I spend a lot of time with Brian at the doctor and researching medical stuff for us, does not make me a doctor. Regardless, what happened with Hannah that night is what led to this diagnosis, so thank God for that.



WHAT TO LOOK FOR:
Signs of SVT in infants are sudden increases in heart rate, difficulty breathing, lack of interest in eating, lethargy, and noticeable chest palpitations. Naturally, since the child is an INFANT, the INFANT, by design, is unable to tell you he/she is experiencing such symptoms. So, Mindi and Matt are to acquire a stethoscope and periodically check Hannah's heart rate. If the condition continues as she gets older and sets her in SVT, dizziness, uncomfortableness, difficulty breathing, etc. can occur.


WHAT TO DO:
You are the lucky parents of a baby with a diagnosed heart condition! What do you do now?!?!? Nothing. mmmhmm. Nothing. Besides watch for symptoms of SVT or more serious heart arrhythmias, the instructions are to do nothing except follow up with the pc every 6 months. Hannah COULD outgrow this. Hannah COULD never have a problem from WPW. She COULD go into SVT, and if they think she is in SVT, then they are to try home external measures stimulating the vagus nerve to bring her out first such as ice on the face and neck, gagging her and taking her temperature rectally. (Wha??? cuz apparently having something up your butt calms the heart stimulating the vagus nerve?) As she grows, if she is in SVT, she will be able to communicate it as it is a rather unpleasant condition to be in. She may also be able to stop it on her own with cold, fizzy drinks, popping her ears, holding her breath, etc. Yes, strange, but google it, you will see. If these measures don't work and she has been in SVT for a while (hour) they are to calmly take her to the ER where medications will be administered to bring her out of the arrhythmia.



LONG TERM:
Many children with WPW never have any SVT or other arrhythmias. Some do. There is no evidence that being in SVT damages the heart long term. Some require medication because of complications. Some don't. There are procedures such as an electrical impulse attempting to close the extra pathway available. Hannah should stay away from stimulants like caffeine, smoking, alcohol and certain medications. There are no restrictions to her activity, but as she is older, she will be able to tell if strenuous activity causes her problems.




HOW ARE THE PARENTS:
Good question. They were stopping for lunch at Buffalo Wild Wings to Mindi's dismay when she called because Matt needed a beer. Mindi was doing okay. Taking it all in. I was googling stuff and reading her stuff as she listened on the phone. As with researching ANYTHING, you are going to read best and worst case out there. So, you have to take it in stride. Then you are going to read a site that says MEDICATION NEEDED only to realize you are on a drug company's page, etc. You have to filter and do what is best for you and your family. I am so glad I will be able to see them Sunday and a couple days after.



Please keep them in your prayers:
For Hannah to outgrow the condition and God to remove it from her life
For the condition to give her NO complications
For easiness and rest of those surrounding Hannah. (china doll syndrome, as I am going to name it)
For ease of mind of the parents.
For a normal life.




I would love to close this post with a recent picture of beautiful Hannah, but as luck would have it, she has also been plagued with a vicious case of baby acne, according to Mindi. So I will leave you with a photo which I have posted before:





Thanks for your thoughts and prayers and wishes. Mindi reads these comments, too, so please direct your comments as though they are for Mindi today.



KEEP BELIEVING

16 comments:

  1. Do Nothing.. OMG How difficult that must be.
    I'm so happy that it isn't anything more serious..but any diagnosis isn't fun.
    My prayers continue for your sister..and everyone.

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  2. Teri MooneyAugust 07, 2008

    Mindi and Matt:

    I'm praying for little Hannah and I know that God is faithful to hear and answer our prayers.

    God bless you all,

    Teri (Laurentius) Mooney

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  3. I have added Hannah and her family to my prayer list.

    I'm so sorry the family is having to go through this. Hopefully they can all relax a little and enjoy their beautiful little baby girl.

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  4. Please know that I, too, am sending prayers and thoughts at mock speed.

    She REALLY is a BEAUTIFUL girl and I'm sure you've already heard how resillient kids are too.

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  5. Wow I have no idea what to say. That can't be easy. I know Hannah will continue to be a blessing to you and any challenges that may lie ahead of you all and her, you will be able to handle it by the grace of God. Congratulations on a beautiful new daughter. Our prayers are with you.

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  6. Mindi & Matt -
    My prayers are with you both and with Hannah. She is a blessed little girl to have a family like yours - Angie says some pretty wonderful things about you and I trust her judgment! God will give you strength and wisdom - just remember to lean on Him! May He bless all of you and heal Hannah!
    Love,
    Marcie (friend of Angie's from college)

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  7. Oh I hope little Hannah outgrows this. Thank you for posting this update. My thoughts and prayers remain with her and her family.

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  8. Mindi,

    Angie's friend Ginger here. I just finished nursing school, and while I was there one of the patient's we took care of had WPW. He was 40 years old and in overall excellent health. He does have a pacemaker and was in to get a new one. He leads a very active life, works, is married, and has children.

    I can't imagine what you are going through. I have been blessed with three healthy children. All I can say is that I hope the above helps just a little and that you and your family are in our prayers. Thanks to God, also, that this was found out now, so that you know what to watch for.

    The Cincinnati Children's Hospital had very little about this (this is the website that Peds ICU uses a lot for references), but it does say "An extra electrical connection (called "accessory pathway") between the upper and lower chamber allows the formation of a circuit that conducts electrical activity faster than the normal pacemaker. This is the most common form of fast arrhythmias in infancy.

    The majority of infants with atrio-ventricular re-entrant tachycardia "outgrow" the tachycardia during the first year of life. The specific diagnoses falling in this category include Wolff-Parkinson-White Syndrome (WPW) and Permanent Junctional Reciprocating Tachycardia (PJRT)."

    http://www.cincinnatichildrens.org/health/heart-encyclopedia/disease/arrhythmia.htm

    God Bless!

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  9. My thoughts and prayers are with your whole family. Doing nothing has to be the most difficult job I've ever heard of...and avoiding "china doll syndrome".
    God's Blessings to you all.

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  10. I will keep her in my prayers. My sister has SVT and she lives a normal life. She played sports even through college.

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  11. Holy cow. Soo glad they have a lead on something. You never want something to be wrong, but you want there to be a reason why. Frustrating that all they can really do is watch and pray. Prayers to them.

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  12. Every once in awhile "Ninja Nurse" comes out...this is one of those times........


    SVT's for an hour before calling the ER?? are you SURE?? I have SVTs too, and if they last more than 10-15min I'm dialing 911. Truly. And you don't need a stethoscope to determine. You'll put your hand on her chest and feel her heart "pounding" And the Afib you won't hear anyway. Early in my marriage I was hugging my hubby and he said "What's wrong with your heart?" It's that apparent.

    And just to let ya know. Don't be surprised if all that vagal nerve stim does nothing. They're finding more and more it's not as effective. I find slowing down my breathing helps tremendously. Sometimes carotid massage (another vagal nerve stim) and mostly just sitting still for a bit.

    Most arrhymias in infants are due to their electrical systems not being fully developed yet and diminish with time. If not there are wonderful medications that will control the arrhythmia just fine. I take Toprol, and there are others.

    Question: Have they put her on a month long event monitor to record how often she's having arrhythmia? It's something to consider. twice a month is a bit different from twice a day.

    Generally speaking, I wouldn't be too worked up over this. Very few people walking this planet have "normal" heart beats. And if there is a problem it is easily treated. Plus, there's always room for a miracle.

    Here's an old Pedi Nurse story for ya....you can google the details.

    I saw a baby born without any Pulmonary Arteries. None at all. Cardiologist said she wouldn't need a followup visit as she wouldn't survive. Last I heard that baby was about to celebrate her first birthday.

    Anytime you need a MIRACLE story...ask me. I've seen more walking talking miracles than you can count.

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  13. I bet she'll be fine, but there is one set of parents who aren't going to sleep for a year...

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  14. My good friend Jill has WPW syndrome and has never had any problems or issues as a result. I will pray the same for Hannah.

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  15. I had never heard of WPW or SVT. Thanks for informing us, Angie. What a scary diagnosis.
    Hannah & her family are absolutely in my prayers.

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  16. Hi Angie and Mindi. It was one year ago today, that we found out our dear little 3 1/2 year old grandson had a heart defect, that was not discovered earlier in his little life. They live in Michigan, and was sent immediently to Grand Rapids for many tests. I don't remember what tests they did, EKG, EEG, BP checks of all limbs.. and so on. He had very high blodd pressure above his waist, and very low blood pressure below his waist. He tired easily when he would play..
    The results came back that he had Co-Arctation of the Aeorta. His Aeorta was the width of 2 pencil leads. A major narrowing. He would need surgery. My daughter and I were on the phone alot.. and googled everything. He was born with this problem, and his midwife did not catch it, nor did his pediatrician at the time. As a new baby sister was about to arrive, they went to another clinic, and pediatrician, and they found the problem.
    At first they thought that they would be able to do the surgery through his back.. but the day before, they discovered that he would need open heart surgery. There are many things that go through your mind.. and the road was hard.. but he is doing fine now.. and has more energy, and spunk than ever before.. He will never have to have surgery again... little Josh is almost 5 now, and he tells everyone that, "God gave him a new heart, because his old one was sick".Sending you our earnest prayers, and compasion.. we know how you must feel. God hears every prayer, and will hear every one that goes up in your precious baby's name. She will be fine.. A friend from the Pacific NW.. Lis.

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