What to Ask
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Hypoplastic Left Heart Syndrome (HLHS)
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This page was last updated on: December 25, 2010
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FAQ - Pregnancy and Birth

Do I need to have an Amniocentesis?
An amniocentesis is optional.  In a small percentage of babies with heart defects, other genetic abnormalities are also present.  If this is so, the survival rate for the baby may be reduced; however, the treatment options remain the same  heart transplant or the 3-stage surgeries.  Amniocentesis itself carries a risk of miscarriage.  So, usually, parents who would abort the pregnancy if genetic abnormalities exist, have an amniocentesis to help them make the decision.  Parents who would not abort even if the child does have genetic abnormalities often decline the amniocentesis to avoid the risk of miscarriage.  Ask your doctor about the risk of miscarriage, and confirm with your surgeon if this information would alter the treatment for HLHS.

Do babies with HLHS need to be delivered by c-section?
Not usually.  Vaginal birth is the norm, since the baby is fine in utero and is usually fine until the Patent Ductus Arteriosis (PDA) closes which isn't until hours or days after birth.  (A drug called Prostiglandin is given after birth to keep the PDA open until surgery.)  However, there may be other reasons that the physicians choose to do a c-section.  Ask your doctor if that is necessary for your situation.

We are getting conflicting opinions about our baby's condition in utero, why is that?
Fetal echocardiograms (ultrasounds of the baby's heart) are wonderful tools to help find problems in the baby's heart.  However, they are by no means perfect.  Doctors cannot see every detail and some of it is up to interpretation.  Also, as the baby grows, the baby's condition can change and therefore, the results from fetal echos can change.  And, as the baby gets larger, his bones and organs grow and actually make it harder to view the heart through a fetal echo.  Since the exact condition of the heart is not known until the baby is born, it is best to find the best surgeon possible to deal with any complications that may arise.  If the baby's condition turns out to be better after birth than expected, which sometimes happens, that is great news.

We're getting conflicting opinions on the best course of action  why is that?
There are a lot of reasons that you may get different opinions about which surgery to choose, the success rates, and the "quality of life" issues for the baby.  As mentioned above, the echocardiograms are not perfect, and so are subject to interpretation.  One doctor may think the findings indicate a more negative situation than another.  Also, a doctor's experience with HLHS cases will greatly influence his opinions.  Doctors who have not seen many children with HLHS and only know that HLHS USED to be uniformly fatal, will be more negative on the possible outcome.  Those who have been working with these children for a long time and have seen many children with HLHS growing up and living very normal lives will have a much more positive and realistic perspective. 

Also, you need to remember that doctors are people with their own perspectives, opinions and value systems that may or may not be in line with yours.  Some very strongly recommend abortion for HLHS or other defects  - while others do not think that is the best option considering such high success rates, or morally they do not believe that abortion should be considered.  You need to find a pediatric cardiologist and surgeon who has experience with children with HLHS to get the most realistic perspective, and find doctors whose values are in line with yours.

I'm confused about all of these doctors  who does what?
You may have gotten the diagnosis by an ultrasound tech, an OB-GYN, a neonatologist, or a pediatric cardiologist.  Once the diagnosis has been determined, you should have a pediatric cardiologist follow you through your pregnancy to watch the baby's progress via fetal echos.  You need to find an experienced pediatric cardiothoracic surgeon to actually perform the surgeries.  The surgeon will rely on the fetal echos and the reports from the pediatric cardiologist to determine how to proceed with the surgeries.  The baby will still need to be delivered by an OB-GYN doctor who will then turn the baby over to the cardiology staff and surgeon when he or she is ready.  See our list of terms for descriptions of different types of medical personnel.

While pregnant, you should line up a good pediatrician as well as a pediatric cardiologist to handle all of the follow up care after birth (this may be the same cardiologist who performs the fetal echos, or you may find another one).  The pediatrician will monitor all of the normal childhood things (vaccinations, illnesses, etc), while the pediatric cardiologist will regularly monitor the baby's heart, any heart medications and any other special care your child may require. Because all of these things are inter-related, you need to make sure that your pediatrician, pediatric cardiologist and surgeon work well as a team and communicate about your child frequently.

Will we be able to hold the baby when he's first born?
Talk with the surgeon and hospital staff about holding your baby.  It is a wonderful opportunity for you to take a few pictures and video before the baby is put on IV's and possibly other equipment, and before the baby has surgery.  Once the baby has surgery, he will be on a ventilator and usually you are not allowed to hold them during that time. 

Usually, babies are fine just after birth; however, many hospitals like to take the baby away immediately to stabilize him and make sure he's OK.  If the hospital agrees to allow you to hold the baby, it will be with the understanding that if the baby is in distress for any reason, you would of course, allow them to take him immediately.  Occasionally, babies are born having trouble breathing and may need to be taken immediately to assess the problem and possibly put the baby on a ventilator. 

You may need to be assertive in requesting to hold the baby.  Make sure you know who to talk to about this since the delivery team is usually different than the surgical staff.  Also, make sure you do this well in advance of your due date if possible to get the right approvals.  If they do honor your request, have them put it in writing in your chart to reduce misunderstandings at the time of delivery.

Can my family see/hold the baby? 
Usually.  Once the baby is stabilized and put on IV prostaglandin, he will usually go to the ICU.  Check with the hospital rules about siblings who are minors, sometimes children are not allowed in the ICU.  Usually, you or other family can hold the baby after he is stabilized unless the baby needs to be put on a respirator or ventilator right away.  There are usually rules limiting the number of people visiting the baby, and when visits can occur in the ICU, so ask the hospital about their visiting policies.

Can we donate blood for our baby's surgery?
Ask the surgeon about the process of having family and friends donate blood for the surgeries as well as the potential benefits.  This usually has to be done well in advance.  For Jehovah's Witnesses, or others who do not want any blood products used in surgery, Columbus Children's Hospital is able to do the 3-stage surgery without blood.  Ask your doctors if there are any other hospitals that are able to perform "bloodless surgeries."

Should we consider storing the baby's cord blood?
Ask the surgeon about this.  The baby's umbilical cord blood contains stem cells that may be able to be used at a later date to help if the child contracts certain diseases such as leukemia.  Medical researchers are just now starting to look into the use of stem cells to help regenerate heart function.  This is a way off into the future  but ask your surgeon if saving the cord blood could potentially help your child in the future and also look into the costs of storage to decide if you'd like to do that.  (Storage can be very costly.)  See the Cord Blood Donor Foundation site for information on cord blood, and look at the "Private Banking" section that describes saving your child's cord blood and provides questions to ask to compare services of different storage companies.

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