If possible, have the diagnosis confirmed by a Pediatric Cardiologist with a fetal echocardiogram (an ultrasound that specifically looks at the baby's heart.) Understand that they need to tell you all of your options, and usually will talk to you about all possibilities - including worst case scenarios.
Get the full diagnosis in writing, with the correct spelling. This will help you research the condition later.
Talk with a Pediatric Cardiologist who is familiar with HLHS. (Cardiologists who work on adults and other doctors may not have much experience with HLHS.)
Research the surgical options: heart transplant and the 3-stage surgeries. Make sure you understand the pros and cons of each, and if your child has any special concerns which would make one option better than the other.
Find a Pediatric Cardiothoracic Surgeon who has done many of the type of surgery you have chosen. You can get referrals from the Pediatric Cardiologist, your insurance company, websites and support groups. Set up an appointment, or a phone meeting and use the "Questions to Ask" to decide which surgeon and hospital you feel most comfortable with.
If possible, visit the hospitals you are considering and look at all areas in the hospital where your baby will be including the ICU, and the general patient rooms where the baby will go after the ICU.
Planning for baby:
Choose a way to help you communicate with friends and family: a contact person, an e-mail list, a phone tree, or a website with updates.) Ask if you will have internet access at the hospital.
Choose a local Pediatric Cardiologist for regular follow-up of the baby after the surgeries. (You do not necessarily have to choose the same Ped. Cardiologist who helped diagnose the condition.)
Choose a pediatrician. You may want to choose the Pediatric Cardiologist first, then have him or her refer you to a pediatrician who has experience with children with heart defects, or one who will at least be sensitive to your child's special needs.
If you are traveling for the surgeries, make plans for other children. Some people take their children and a grandparent with them to the out-of-town hospital, and some leave older children with grandparents or other family members. Arrange for someone to watch your house, pet-sit, pick up mail and send you important bills, etc.
If at all possible, arrange to have someone with the baby 24 hours a day once the baby is out of the ICU. In the ICU there is usually 1 nurse to each baby, but this ratio changes quite a bit one the baby is "on the floor." Often, one nurse is responsible for several patients, and will not be able to attend to the baby's needs at every moment.
Decide if you would like a baby shower, or if you want to wait until after the baby is home after surgery - and have a welcome home party, instead. Communicate this to your contact person, and let him or her pass this information along to family and friends. They will be relieved to know what you want.
Once you've decided upon a hospital, call your insurance company to make sure you are pre-certified, if necessary.
Before leaving the hospital:
Set up an appointment with your pediatrician and Pediatric Cardiologist to see the baby soon after you're home.
Work with the hospital social worker to set arrange home health visits, if applicable. This is where a nurse can come to your home to help you with the baby's medical needs. Find out if your insurance will cover the visits and any supplies that may be needed.
Get instructions in writing on:
-- How to draw and administer any medications.
-- What each medication is for.
-- If and when to re-give each medicine if the baby throws them up.
-- When and how much to feed the baby, and how to give feedings (breast, bottle, ng tube, etc.)
-- Symptoms to look for. When to call the doctor or call 911.
Organize the baby's medicines, and write down the schedule. Drawing up a few day's worth of medicines can help make the process a lot easier (except for aspirin which should only be diluted just prior to giving it).
Organize your hospital and doctors bills. Make sure you understand what portions you are responsible for and which the insurance will pay. Creating files for the baby's medical bills will help you keep organized.
Arrange for an in-home evaluation from Early Intervention. This is usually a free service, and they can provide help with feeding issues, physical therapy, etc. Babies who undergo are considered "at risk" for developmental delays because they spend a lot of time recovering from surgery. Not all babies will need services, but it is a good idea to have the baby evaluated as soon as possible, so services can be started in case they are needed.
Make sure that any visitors wash their hands thoroughly before holding the baby. No one with colds or other illnesses should come near the baby. Keeping the baby away from children can also decrease the chances of him or her getting an illness.
Ask the pediatric cardiologist about the RSV vaccine. RSV is a respiratory illness that can affect preemies and babies with heart conditions. Some insurance companies will cover it for heart children, others won't, but you should look into the vaccine because RSV can be a very serious problem for HLHS babies.
Ask your doctor about flu shots for the baby and anyone else who has a lot of contact with the baby - such as the parents, siblings and other close family members.
Call your local ambulance/Fire Dept. to see if you can register with them, just in case of an emergency.
Write up information on your child's condition, including all meds and normal oxygen saturation levels in case of an emergency. Keep a copy in your house and one in your car. If you leave the baby at a family members house, you should keep one there too. You can also get a MedicAlert bracelet (see below.)
Sound and Movement Monitor: a monitor which has a sensor goes under the crib mattress, and can detect any motion even breathing. If it does not detect motion for a few seconds, an alarm sounds. These can sometimes have false alarms, such as if the baby rolls to the edge of the crib, off of the sensor. However, this monitor can help give you great peace of mind while you sleep. Also, putting the sensor on a hard, flat surface, such as a board under the mattress can minimize false alarms. One brand is called the Angel Care Monitor and is sold in baby stores for approximately $80.
Medic Alert bracelets are available on www.medicalert.org go to "parents" section. If there is an emergency, medical personnel will call the toll free phone number on the bracelet and MedicAlert will give all pertinent medical information (such as the normal oxygen saturation level for your child, and any medications he or she takes, etc.)
"Vials of Life" are free from WalMart pharmacies. They are containers in which you keep a list of any medications that you or any family members are on. They come with a sticker that goes on your car or home window to alert medical personnel that there is medical information inside.
Free syringe samples and blue caps from Baxa Corp: www.baxa.com
EMLA cream can help numb the skin before blood draws. Ask your doctor for more information.
Tender Grips can help those using NG tubes. They are like round band aids that hold the tube onto the baby's face without irritating the skin. You can ask your Pediatric Cardiologist to order them for you or get them from the respiratory department of the hospital. You can see what they look like at: http://www.salterlabs.com/products_con.htm
Wetsuits for babies and children: Some children with heart problems get very cold while swimming. Warm Belly (www.warmbelly.com) and Right Start (www.rightstart.com) sell wetsuits for babies and children. Warm Belly will waive the shipping fee if you tell them you have a child with special needs.