Congenital Heart Disease Open Heart Surgery For Babies and Toddlers

On 1 December 2002 I had little exposure to heart disease however only 10 days later was at the Pediatric Intensive Care Unit (PICU) bedside of our newborn baby who required lifesaving open heart surgery.

Whilst many diseases are extremely well known, the following are little known facts:
Heart defects are present in 1 in 100 babies
Heart disease in children is the leading cause of childhood death in Australia accounting for 30% of all child deaths.
Nearly twice as many children die of congenital heart disease compared to all childhood cancers
In 80% of cases the cause is largely unknown.

The amazing thing is how far medicine and surgery has progressed to allow a second chance for many babies like ours that only 20 years ago would not have survived.

Whilst there is a myriad of different abnormalities that can occur, our newborn baby required reconstruction for a coarctation of the aortic arch, reconstruction of both the aortic and mitral valves and closing of a Ventricular Septal Defect (VSD).

The mitral and aortic valves were narrow and the anatomy of the valves was somewhat different to what they should have been. Whilst the aortic valve reconstruction was quite successful, the mitral valve is far more complex and following surgery the gradient across the valve was still high thus leaving our baby with mitral valve stenosis (narrowing of the valve).

This particular surgery took 5.5 hours and the stakes were high a one in ten or 10% chance that our son would not survive.

Following surgery the next 24 hours is seen as a vital period where if problems are going to be encountered, this is likely to be the period. This is not to say that post 24 hours means everything is fine and dandy. Recovery in our case was slow with a further ten days in the Pediatric Intensive Care Unit for weaning off the ventilator which assists and at times initiates breathing, as well as waiting for the heart to settle so that pacemakers and other medications are no longer necessary.

Much of the recovery period is trial and error or more like careful monitoring and adjustment as necessary. For example following heart surgery patients are fluid restricted to assist the work the heart has to do thus attempting to prevent the build up of fluids leading to heart failure. On the other side of this coin however is that a patient can then end up dehydrated.

It is hard to know whether advance knowledge of a heart condition in an unborn baby would be better than the shock we experienced with diagnosis two days after the birth of our child. Either way it is an enormously stressful process that in our case did not and has not ended with the surgery following birth. In many instances further surgery is required, for us another reconstruction of the mitral valve at two years of age and further surgery is expected with ultimate replacement of the mitral valve with an artificial valve.

The unknown throughout our process and in many cases is when the next surgery will be required. For these cases, families of babies, toddlers and children go from day to day, week to week, month to month, and sometimes year to year before the next call to surgery comes.

For all those in a similar situation our thoughts and prayers go out to you. For anyone interested, the amazing story in relation to the ongoing saga with our son can be found at http://www.beatinghearts4kids.blogspot.com .

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Tags: congenital heart disease, open heart surgery, ventricular septal defect

The Benefits of Having a Home Team Following Your Heart Surgery or Other Major Surgery

Its essential to organize a Home Team before you go in for heart surgery, even if you have little time before your surgery to plan it. On the other hand, if you have just gotten home from the hospital, dont worry its not too late. A Home Team is a group of friends and family who are willing to assist you in your recovery following your surgery. Make a list of up to fifteen people, family and friends (but not your primary caregiver) who would be glad even honored to be called to help out. Pick a leader among these friends and engage her or him to contact the others about the tasks ahead. Set up a revolving schedule of assignments for your first three to four weeks at home.

Your Primary Caregiver Has The Most Important Role

Who will your primary caregiver be; your spouse, your partner, a friend, or another family member? In my new book, The Open Heart Companion: Preparation and Guidance for Open-Heart Surgery Recovery the following scenario is explained to help you better understand their importance: Suddenly your caregiver, your close personal ally, has the extended responsibility for all previously shared arrangements nursing aid, household tasks, transportation, medical and social plan coordination. It can become overwhelming and too much for one person. That is why it is essential that you line up a supportive Home Team to pitch in. Your primary caregiver needs assistance and taking care of too. Once you are home and recovering, he or she is now on 24/7. He or she also needs continuing acknowledgment, appreciation and love from you. Plan to regularly express your gratitude. Find out how your loved one is feeling every day. Though sometimes you wont feel like it, remember to smile, and show you care and appreciate all that is being done for you.

Five basic tasks to assign to your Home Team

1. Dinner nightly
Some friends will like to prepare a home cooked meal for both patient and caregiver, while others can pick up a heart healthy take-out meal. Since the reality of landing back home means the primary caregiver has antenna focused on you continuously, your caregiver loved one will appreciate the sit-down break at dinner time.

2. Buddy system
During the many hours and days of convalescence, neither patient nor primary caregiver wants to feel isolated at home. Anticipate a buddy system in advance. Is there a friend who has been though open-heart surgery who will agree to check in with the patient regularly? Is there someone that the heart patient can call spontaneously? Many basic questions can be answered this way, by a friend or family member. Naturally, any substantial recovery question requires picking up the phone and calling your designated medical professional. Maybe you know, or know of, a former heart patient who also is a medical professional? Arrange chat times (perhaps twice weekly) with him or her. Primary caregiver and patient should also plan regular phone time with a best friend independently, to be free to let their hair down to tell it like it is.

3. Running errands
Who friend or neighbor would be willing to be counted on to run to the pharmacy or to deposit or pick up laundry or dry cleaning? How about someone who will shop for staples at the supermarket or buy a box of thank-you notes? Recruit a list of volunteers beforehand. Its critical to have this in place to enable you to focus on getting well.

4. Housekeeping
In the hospital take-home instructions, there are very specific physical directives that must be honored while the sternum (breastbone) is healing. You are not to lift more than five to ten pounds for four to six weeks. As well, you are to avoid pushing/pulling activities with your arms, and also avoid heavy one-armed lifting for three months. This eliminates carrying groceries, carrying a toddler, vacuuming, shoveling snow, mowing the lawn, raking leaves even wiping up a kitchen counter with a sponge can be challenging in the first couple of weeks. It is best to schedule others for regular housekeeping duties for at least four to six weeks and/or consider hiring a house cleaner for the short term.

5. Chauffeuring
An open-heart patient may not resume driving for six to eight weeks until the sternum is fully healed. Because you dont want to risk re-injuring the sternum should a passenger airbag need to be deployed, you might be advised to ride in the back seat using the shoulder seat belt. That said, you can ride in a car as soon as youre home to a medical appointment, to the store, to eat out. However, all these outings become a lot of driving for the primary caregiver, so line up chauffeur volunteers.

Recovering from heart surgery can be challenging, but with these tips and more tips on planning ahead found in The Open Heart Companion you can ensure that your recovery will go smoothly.

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Tags: heart surgery recovery, open heart surgery, plan coordination

You are now home from the hospital, and while the healing process is well underway, or you would not have been discharged, there are miles to go. There seem to be so many instructions to remember. You simply will not be up to much in the first few weeks, and in some cases, for several more. I wont understate this. Yes, an upbeat approach by the hospital medical staff may have sent you waltzing home and its thrilling to be leaving the hospital, where you havent been permitted to sleep through the night. Yet you are returning home greatly fatigued, with a medications schedule to manage, possibly a tank of oxygen, and perhaps recurrent irregular heartbeats or other complications that remain unresolved. Now is the time to dedicate yourself to the hard work of recovery. Alternating rest and exercise, and above all patience with the physical and emotional trials ahead, is your assignment for the next several weeks.

You and your caregiver will mostly be on your own unless your particular situation requires a treatment plan that includes post-op visits from a home health care nurse. Even if thats the case, now is the time to review any guidelines your hospital medical team has given you about what to be aware of.

If you have purchased the paperback or downloaded the e-book version of The Open Heart Companion: Preparation and Guidance for Open-Heart Surgery Recovery, from my website http://www.openheartcoach.com, its time to reread Chapter 5, The Challenges You May Face. This chapter provides detailed information not only on challenges that may arise in your recovery, but it also supplies solutions as well. For example, on the subject of feeling isolated: This is the time to find other open-heart surgery survivors and their caregivers to talk to. Swap stories, share information, hear what other families have gone through. Just knowing that you are not alone as you go through your rehabilitation can lift the veil of isolation. There can be a tendency to hold ones surgery and recovery experiences too privately, but not reaching out to others will only deprive you of receiving compassionate support. If you are feeling isolated, do yourself a favor: reach out to friends and family, and look for a heart surgery support group locally or online. However, whenever in doubt about what you may be experiencing specifically, contact your designated medical liaison for professional diagnosis or medical attention. No question or concern is too trivial.

For most of us, there is a difficult recovery challenge from the time we leave the hospital until we are healed and strong enough to enroll in a local rehab program. Thats one of the reasons for my book, to bridge this gap as so little medical attention is focused on the recuperation period that lasts anywhere from four to eight weeks. We thought getting through surgery was the biggest hurdle. However, the hurdle is greater when we are home on our own with not much progress to report fast enough — and without all those experts in the hospital to lean on.

Every recovery is different. If youve been told to expect improvement two days forward, one day back, you might be disappointed to experience instead only one good day (a period of energetic spunk) followed by two, three, or even four days of just plain feeling lousy. Even to meet the assignment of increasing your walking time from five minutes to ten minutes a day may feel like an insurmountable task at first. You may also be swinging in and out of temporary depression. (In my case, I wished the discharge nursing staff had emphasized the psychological challenges of recovery, not just the physical stresses.) Or, you may feel off, and think you might be coming down with a virus. That might be the case, but feeling off can be due to other things as well: you may have become anemic (as I did); you may be having an allergic reaction; sleep deprivation may have caught up with youthere are many possibilities. Know that everyone goes through discouragement, yet those who are informed to expect ups and downs will fare far better.

Recovery after surgery takes time. Theres often a feeling of being all alone. Because I, and dozens of patients and caregivers who were interviewed for The Open Heart Companion, have gone through open-heart surgery recovery ourselves, I offer the help you need via a free monthly phone support group, a newsletter specifically on recovery, a highly informational paperback (also available as an e-book), and general practical tips. Stop by my site at http://www.openheartcoach.com to see how we can help you recover faster.

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Tags: health care nurse, heart surgery recovery, open heart surgery