After a Norwood procedure (stage 1) you will have at least six months with your baby before another surgery will be scheduled unless a problem develops. After a Hemi-Fontan (stage 2) you will have one to four years before the completion Fontan (stage 3) will be done. You will have frequent visits with your child’s cardiologist. They will monitor your child’s SATs (oxygen saturation level) and general overall progress.

Warning signs you should be aware of between surgeries include: cyanosis, lethargy (baby tires out more easily than before), shortness of breath, tachypnea, and feeding problems or poor weight gain. Any of these warning signs warrants a visit to the pediatrician. You should also call your pediatrician for an appointment for any early signs of infection (fever, cough, runny nose) before the infection travels to the lungs.

One thing the doctors will make abundantly clear is that there are no guarantees. Your baby may not make it to the next operation. If a clot develops in the shunt or the shunt closes after the Norwood, the baby will not survive. Your child must be well before another surgery will be performed. Some children are not good candidates for the next staged procedure. These children may become good candidates, though, for a heart transplant or may be able to survive without the next scheduled surgery.

You must treasure each and every moment you have with your baby. You should treasure every moment with any child you have. Many children die each year because of accidents in the home, choking, car accidents, etc. We never have a guarantee with any of our children on the amount of time they will be with us.

This waiting period is very difficult. I know that I said a prayer of thanks every morning when I checked on Alex because he was alive. I also said a prayer of thanks every night for having had another day with him. It is not uncommon to check on your baby frequently and worry that he or she is not breathing. It is also common to still feel overwhelmed and overwrought with emotion. The reason for this is that all of us are going through the grieving process.

The Grieving Process

Regardless of the outcome of any surgery, you will go through the grieving process. For nine months (possibly longer) you have planned and dreamed about the birth of your perfect baby. For some of you this vision was shattered within hours of birth. For others of us perhaps we had days or weeks to become attached and love our babies before finding out what prevented them from growing properly. Some of you may not even have had the luxury of hours, days or weeks. Some of you found out while pregnant that your baby would be born with heart problems. You probably wondered if the baby could even survive the birth process.

All of us are grieving. You don’t have to lose a baby to grieve. We grieve for the loss of the perfect baby we dreamed about. We grieve because of the shattered visions of our children becoming anything they want to become. We grieve because of the anguish of being helpless and vulnerable and relying on others to take care of our babies.

What is the grieving process? The grieving process is a time when you must come to grips psychologically with a loss of some kind. In our case, we must come to grips with the fact that we could lose our baby because of a birth defect known as Hypoplastic Left Heart Syndrome. This is a tremendous loss to have to accept. At best, we must accept the fact that our baby will have to undergo at least one operation to survive. Because of all of this we will experience a number of complex and sometimes conflicting emotions.

Shock/Denial --when told that something serious is wrong with one’s baby the first emotion most people feel is shock. They are overwhelmed by such news. The first stage they usually go through is denial and disbelief. This just can’t be happening. Oddly enough, being in denial is what enables us to handle the situation. You will probably feel robot-like. You won’t even remember when or if you ate, slept or showered. Being on automatic pilot allows you to cope.

The rest of the stages we may go through in any order. All of us will continue to go through all of these stages at different times in our children’s lives. It is our way of dealing with having a special child.

Bargaining --the most frequent thing that is done in this stage is making a deal with God. “If You’ll let my baby live, I’ll be a better person, go to church regularly, etc.” It is striking up a bargain with God. Sometimes people wish what were happening to their child were happening to them instead. This is another form of bargaining.

Guilt --this feeling strikes at the heart of parents as they worry that they somehow caused the heart defect. Some parents have confessed to me that they went through bad periods of guilt, first feeling guilty himself/herself, then blaming the spouse. This is a normal phase to go through.

Anger/Depression --even if your baby survives you will go through a bout of depression. You may even scold yourself for feeling this way, because after all, your baby made it. Still, your baby is not the baby you thought you would have. And it can be very depressing spending a lot of time in the hospital and doctor’s offices. These times are constant reminders that there is something wrong with your baby. A period of depression can also occur because you have had to change your lifestyle so much. You can no longer go shopping, go to a restaurant or do the things you normally did before first considering the effects such an excursion might have on the baby. If you have had to quit your job in order to stay home with the baby expect to have even more depression.

Acceptance/Growth --this is the phase where you finally come to terms with the baby’s heart defect. Once you begin to accept your baby’s condition you will probably go through all of the phases again. It isn’t like you come to the acceptance phase and then you’re through.

You will be faced with certain (often unforeseen) situations which will send you whirling through the phases again and again. You will, as time goes by, come to deeper and deeper levels of acceptance. With a good support group of family and friends you can turn this experience into a growing experience for yourself. You can become a much stronger and compassionate person.

Some Tips on Surviving the Grieving Process

1. Reach out to others - family, friends, people in an organized support group, a counselor - whoever you feel can help you.
2. When you are feeling depressed, force yourself to get out of the house for a while and do something good for another person. You can visit someone in the hospital, cut an elderly person’s lawn, teach somebody something, anything to make you feel like you have done something nice for another person. This will help lift your depression. You may even want to consider doing volunteer work on a weekly or monthly basis.
3. Forgive yourself and your spouse. You didn’t cause this problem. Nobody is trying to punish you.
4. Write down your feelings in a journal or notebook. Some people find that writing down feelings and emotions helps them to better deal with difficult situations.
5. Allow yourself and your spouse to cry. Many mothers I talked to told me that sometimes they just felt like crying for no reason at all. I have felt this way, too. Sometimes a good cry is very therapeutic.
6. Allow yourself and your spouse to be angry. It is not fair that your family is having to go through this ordeal. But, instead of looking at it in a negative light, try to channel your energy in a positive way. Although this situation isn’t fair, life often isn’t fair. Learn to make the best of it. Challenge yourself to become a better person.
7. It may be tempting to use alcohol or drugs to try to get through this. You need time. You need love. You need support. Above all you need to get through this with a clear head without any habit-forming crutches.
8. You may find yourself questioning old beliefs. Stressful times like this are often a challenge to one’s faith or philosophy of life. This is normal. It may help to read some of the books listed in the reference section under The Grieving Process. Your minister, rabbi, priest or local librarian can also recommend other good books.

Every person’s way of handling grief is different. This can cause conflict in any marriage. If you communicate with your spouse while you are going through these phases you might reduce some of the conflict. Right now it is very important to try and be understanding with your spouse and your spouse’s feelings. Remember, too, that your other family members will also be grieving. It may be important to share thoughts and feelings with other family members, especially the baby’s siblings, so that everybody has a chance to express emotions.

Sharing your feelings is important because if you are pretending to be strong it could be interpreted as being uncaring. What one person feels might be helpful, could be causing hurt feelings. The only way to know if you are helping each other is through a lot of discussion. Sometimes you may not even be aware of how you were feeling until you take the time to talk it out. It was often in the midst of a discussion that I was finally able to analyze how I felt and come to grips with it.

Siblings

Perhaps the people hardest hit aside from you and your spouse will be your other children. For nine months they have watched the miracle of life happening inside their mother. They have seen their mother blossom and felt the tiny kicks and movements the baby made. Perhaps they even talked, read or sang to their anxiously awaited sibling. Perhaps there were feelings of jealousy. In any case, most parents and siblings will not have any idea that the baby has a heart problem until the baby is born (unless you found out in utero through an ultrasound).

Expect your children to be concerned, have bad dreams, and feel guilty. It is very important for you to be honest with your other children and tell them what is happening. Reassure them that the baby’s disease is not their fault or yours and that you have good doctors and nurses taking care of the baby. You and your spouse should discuss whether or not you want your other children to go to the hospital to visit the baby. My husband and I did not let our other son visit until the baby was off the ventilator because he was a preschooler and we didn’t want him to be frightened.

Common Misbehaviors

You may also have some misbehaviors from your other children when you and the baby come home from the hospital. My son was very clinging. He didn’t want me to leave his sight. Although we had enrolled him in some gymnastics classes before the baby’s first surgery, and he seemed to do well, after the surgery he didn’t want any part of them. He had nightmares. For a while he asked if the baby had to go back to the hospital. These anxieties are normal. Again it is important to communicate. It was through a lot of discussion that we were able to go back to our normal routines and family life.

Some children regress in other ways. It is not uncommon for young children to have difficulty with potty training or wetting the bed. Although you will be very tired and worn out, it will be extremely important for you to be understanding and take time with your other children. The investment of your time and attention will help your children to recognize that you value each and every one of them. It is important for you to listen to their concerns and help them cope with their own feelings. Some children may be afraid that they, too, will have to go to the hospital. My son asked me if he was going to have surgery, too. Because I listened to his concerns and was honest with him, we didn’t have problems for very long.

Other common misbehaviors associated with having a sibling hospitalized are:

• eating changes (overeating or lack of appetite)
• withdrawing (talking less)
• “acting out” (in good ways and in bad ways just to get attention)
• showing outbursts of stored up feelings or,
• acting jealously and fighting with other family members.

How to Help Siblings Cope

When dealing with toddlers the most important thing to do is to be honest and keep them informed as to what is going on and what to expect. You must use language you know they understand. It might be helpful to explain to a toddler that it is alright to be upset, cry, ask questions, etc. You need to help your toddler make sense out of his feelings by labeling them as you see them. This will help your child identify certain feelings and emotions. Toddlers may feel jealous or guilty, thinking they somehow caused the problem. It is important to accept and acknowledge these feelings and to explain that the baby was just born the way he was; it was nobody’s fault.

If you know ahead of time that the sibling will be going into the hospital, then the toddler can help with the preparations and planning. They can help with the packing. They can go with the sibling to the hospital. This would allow ample opportunities for the toddler to ask questions. It would also probably make the toddler less afraid of the situation because he or she would see exactly what was happening. During the toddler years, children have incredible imaginations. If they do not understand a situation their imagination takes over, and they become afraid.

My husband and I decided to take pictures of our son and of some of the doctors and nurses taking care of him. We showed them to our older son. It was reassuring for him to know that there were people at the hospital taking care of the baby.

When dealing with young school-age children, you will want to allow them opportunities to go on a tour of the hospital and possibly look at books about going to the hospital. This will give them opportunities to ask questions and voice concerns. It will also give them a chance to meet some of the staff and to see that their sibling will be well taken care of.

Please take the time to make phone calls to your school-age children’s teachers and the school principal. These people will be important sources of support to your child, and they deserve to know what is happening. Some children are so overwhelmed that they withdraw. Teachers may see uncharacteristic misbehaviors and be unaware of the cause. If the teachers know what is happening, they can provide extra support to your child.

Some other things you can do for your school-age child are: let the child act out the hospital experience with people, puppets or dolls. Let them draw and color pictures about the hospital or about the hospitalized sibling. If the children cannot write yet, you might let them dictate a story to you. Children can also make cards, stories or pictures to send to the patient. They could also make audio or video tapes to send to the patient.