Newly diagnosed

Being told that your unborn baby or child has a Congenital Heart Defect can be devastating to say the least.  1 out of every 125 babies are born with a congenital heart defect in the United States each year and CHD’s are the most common birth defects. There are over forty different CHD’s, some of which require immediate intervention and some of which require only the watchful eye of a cardiologist. The good news is that drastic medical advances have been made in the treatment and surgical repair of children with congenital heart defects.

The most important word we can share at this point in the journey is: HOPE. There is abundant HOPE for children with Congenital Heart Defects. We are here to help connect you to other families who have walked this road and can share their story of HOPE.

In Michigan, we are very fortunate to have two of the best children’s hospitals for treating even the most complex of CHD’s:

University of Michigan C.S. Mott Children’s Hospital:
http://med.umich.edu/Mott/congenital/index.html

Children’s Hospital of Michigan:
http://www.childrensdmc.org/pediatric-heartcenter

Helpful Tips for Parents who have just learned their child has a CHD that requires surgical intervention

Ask questions. Educate yourself about your child’s condition.

Find a reputable surgeon and set up an initial consultation.

Contact the Social Worker at the hospital your child is having surgery at. Ask questions about the hospital, the local area, and where to lodge. Ask the Social Worker for a tour of the hospital and unit your child will be after surgery.

Network with other CHD families to establish a support system.

Set up a carepage for your child through www.carepages.com. This will allow you to post updates and photos as well as receive messages from family and friends.

Ask your employer about Family Medical (FMLA) Leave Act.

Talk to family members/siblings. Be honest and try to explain what will happen. Provide them with a brief overview of your child’s diagnosis and a summary of what will happen after birth.

Helpful tips for Parents whose child is diagnosed in utero

Ask questions. Educate yourself about your child’s condition.

Find a reputable surgeon and set up an initial consultation.

Contact the Social Worker at the hospital your child is having surgery at. Ask questions about the hospital, the local area, and where to lodge. Ask the Social Worker for a tour of the hospital and unit your child will be after surgery.

Network with other CHD families to establish a support system.

Set up a carepage for your child through www.carepages.com. This will allow you to post updates and photos as well as receive messages from family and friends.

Ask your employer about Family Medical (FMLA) Leave Act.

Talk to family members/siblings. Be honest and try to explain what will happen. Provide them with a brief overview of your child’s diagnosis and a summary of what will happen after birth.

Discuss your birth plan with the high risk obstetrician and get a feel for how they will handle the birth and exactly what the plan is for the baby after birth.

Choose a pediatrician for your child. Make sure it is someone local and one who understands your child’s diagnosis and has experience dealing with children with congenital heart defects.

As your delivery date approaches, make arrangements for someone to watch your children/pets/house.

Pay all bills and prepay if necessary so that you won’t need to worry about paying bills especially if you are unsure of the length of time you’ll spend at the hospital.

Be sure to pack bags and map out the quickest route to the hospital.

Make an extra effort to spend time with your spouse, get away for a night, or plan a special dinner together.

Birth of your child

Review your birth plan with your OB. Ask lots of questions about labor and what will happen after your baby is born. If you have certain preferences such as wanting to use a birthing ball, let the labor and delivery nurses know.

Plan in advance and think about who you may want in the delivery room. Ask the OB team what is permitted.

Ask a family member to take photos/video footage of you with your baby.

Keep in mind that things may not go according to plan. In fact, many times things don’t go as planned! The health of baby and mother is top priority. Don’t feel like a failure if things happen that are out of your control.

In most cases, your baby may need to be taken to the NICU after birth. Here you may see your child in an isolette, with IV pumps, and syringe pumps that administer meds. You child may receive oxygen or may be on a ventilator. There will be an overhead monitor that tracks your baby’s vitals. You will be overwhelmed with love and concern for your baby.

While Hospitalized

Be your child’s advocate! Don’t be shy to question why certain procedures are being done or ask about what medications are being given. Ask your nurse to explain any procedures or terms you are unfamiliar with.

Wash your hands frequently, especially when entering your child’s room. Require family members and visitors do to the same. Request that those with a cold or cough put off a visit until they have completely recovered.

Ask to speak with a social worker if you have any questions regarding lodging and insurance. If needed, ask if your child is a candidate for Children’s Special Health Care.

Ask about parking passes/meal coupons. Remember to get parking tickets stamped for a discounted rate.

Some hospitals offer free meals to nursing mothers. Be sure to ask the nurse to have a dietician bring daily menus to fill out if you are interested.

Ask your child’s nurse if you can bring in photos to personalize your child’s crib or room.

Rest when possible. Take breaks when you need them.

Allow yourself moments to cry and break down. Go easy on yourself and don’t place unnecessary guilt on yourself if you need to take a break from your child’s bedside.

Take photos and post updates on your blog or carepage. Take the time to read messages of encouragement.

Don’t be afraid to ask for help! Your family members and friends will be looking for ways to help and would love nothing more than to run an errand, bring you food, or just sit and visit with you in the waiting room.

After Hospitalization-Transition to Home Life

Hearing that your child is going to be released from the hospital is both exhilarating and frightening. If your child is going home with medications, be sure you know what to give and how frequently. Ask the nurses to write up a med schedule for you.

Ask if the meds can be found at a typical pharmacy.  You may need to inquire about a compounding pharmacy. Ask about syringes for meds.

Inquire whether a home health nurse can visit and assess the baby at home.

Ask your child’s doctors or nurses what type of restrictions your child may have, if any.

Make arrangements to rent any equipment such as pump, or nebulizer, etc.

You may  need to limit the number of visitors when you get home.

Be sure to keep a list of important numbers or who to contact after hours.

Inquire about RSV (synagis) shots as a preventative to the respiratory syncytial virus.

Be sure to get a “going home” photo with your child! You may be nervous the first few days at home. If you have friends or family who offer to bring you a meal or run an errand, say yes! Enjoy your time at home with your child!