For three years and five days we lived under the illusion that we were raising a completely healthy child. Ignorance is not always bliss, sometimes it can be lethal. The path of not knowing would have cost our son his life if we didn't have a doctor that knew what to look for in every child and screened accordingly. It is my goal that no child will go unscreened and that every parent will know what examinations and tests to ask their child's doctor for.
A year ago I had no idea what a congenital heart defect was. I had heard of kids that had something wrong with their hearts before. I always thought stuff like this only happened to mom's who were older when they had their babies (I was 25) or had a family history of heart problems, or didn't take their prenatals or something. I took perfect care of myself when I was pregnant. Never missed a prenatal vitamin, walked, ate all the healthy food I could hold down etc.
1 in 100 babies are born with a conegnital heart defect. Pierson's CHD is called Coarctation of the Aorta and it was severe enough to require surgery or he would no longer be with us. If this had been caught at birth he would have been a candidate for surgery within his first few days of life. A 2 inch section of his aorta never developed beyond the size of the tip of a ballpoint pen. On both sides of the coarctation the aorta was extremely underdeveloped, although the right size and was in danger or rupture. If your aorta ruptures you die and there's nothing that can be done to save you. We are fortunate that this was found just in the nick of time to be corrected. Unfortunatly because his heart had been working so hard to push all the oxygenated blood the lower half of his body needed through a teeny tiny hole he was entering heart failure and his heart was hardened and large. It's doing better now but he does have 1 year of occupational therapy to get him back to exactly where he needs to be. He will have to see a cardiolgist for the rest of his life and even though his coarctation is repaired he will always live with congenital heart disease. He was sick his entire life we just didn't know it.
When he was born we were assured that he was healthy with the exception of a birthmark on his head that would need to be removed at some point in his life and his legs being bowed a bit from being breech. Other than that, we were told everything was fine. As it turns out Pierson's CHD could have and should have been caught either in uetero or shortly after birth. The list below is a list of what you should demand your baby have at birth:
1. Pulse Oximetry Screening: You want this performed at least twice. Once when your baby is 24 hours old again immediately before you leave the hospital. Anything below 95 warrants a consult by a cardiologist immediately. Don't let them talk you in to a week later, ask for the first available or not to be discharged from the hospital until the child has been seen by a cardiologist or has had an EKG and echocardiogram
2. Blood Pressure Checks on All 4 Extremities: Pierson's surgeon's nurse practitioner told us that if they did "quad extremity" blood pressure screenings at birth and during every well child check they could catch almost every congenital heart defect. Pierson's CHD was found the first time he ever had his bp taken on his arms. He had 3 other procedures for his ears and the aforementioned birth mark and all 3 of these times he had his blood pressure taken on just his lower extremities because that's what is "convenient" for working with children. The defect on P's aorta made the blood pressure low on his lower extremities because only a small amount of blood made it to his lower extremities through his underdeveloped aorta. BP checks will also catch other major CHDs that could kill a baby at a few days old like hypoplastic left heart syndrome. These BP checks are also very effective at catching ventricle and atrial septal defects (holes in the heart). Theses blood pressure checks should be done at every check-up. Many hospitals or doctor's offices will say "oh, we don't do that, just the arm or just the leg is fine". Well, it's not. DEMAND THIS! No one else will speak up for your baby if you don't.
3. Ask if they hear a murmur. Ask the pediatrician who examines your child after birth at the hospital, ask the nursery nurses, ask your pediatrician at every office visit. The more ears that listen the better. Murmurs be completely harmless or a tell-tale sign of a serious problem. Note: Not all children with CHD's have a murmur (Pierson did not)
4. Ask if your baby has good strong pulses in their feet and groin. They should be throbbing pulses. If your baby's heart is not pumping correctly they will have decreased or no pulses in their feet or groin. Pierson had a very faint groin pulse and no pulse in his feet.
5. Watch your baby cry for a little bit. I know this sounds mean, but let your baby cry a little bit and take a good look at their lips/mouth and fingers. Are there any tinges of blue? This could be a sign of oxygen levels dipping because of a CHD.
6. Pay close attention to your baby's skin colorCHD. Some CHD babies and kids always have good coloring though.
7. If your baby breathing a good rate? If his or her chest is moving up and down rapidly or the breathing seems labored bring this to your doctor's attention.
8. Shortness of breath or exhaustion during feeding (for the baby, of course) are something that need to be brought to your doctor's attention.
We asked a lot of really silly questions when we first became parents. If only we had known the right questions to ask about our baby's health. We are thankful that our child is still with us, we realize that without a good pediatrician knowing what to look for (because we sure didn't!) we would not have Pierson with us today. Spread the word to your mommy friends. Make sure they are taking their child to every one of their check-ups and well child visits, even the ones where they don't need shots. It could save the child's life.
9. If your baby looks puffy: around the eyes, abdomen looks bigger- not just baby pudge, or in the legs this needs to be addressed.
At your OBGYN Visits:
1. Sonograms: At each sonogram from 20 weeks forward ask about your baby's heart. Are all 4 chambers present and the correct size? Are all 4 chambers and both sides of the heart the same size? Can you see the great arteries? Does it look like it is functioning correctly when it beats?
2. Fluid levels can be a sign of CHDs in some moms. Either too much or too little is something to look in to.
I would say 98% of the heart families we meet did not find out until after their child was born that there was anything wrong w/ their hearts -- some of them that had advanced level sonograms too.
We read all about ways to carry to full term, SIDS (over half of SIDS deaths are estimated to actually be undiagnosed CHDs) yet no one tells you what to look for in your child to see if they might have the most common birth defect in America.
Having a child with CHD is very scary, but there is hope: it just needs to be diagnosed and treated within a timely manner. Texas is horrible about screening for CHDs yet has 4 of the best children's hospitals to treat them. (Texas Children's in Houston, Children's in Dallas, Medical City Children's in Dallas, and Cook Children's in Ft. Worth.)
Be an advocate for your child. We are thankful for a pediatrician who knew what to look for because we didn't know anything about what to look for. Make sure and take you kids to their check-ups and well child checks. They're not just for shots! They can save your child's life. Talk about this with your mommy friends. 1 in 100 is a huge amount of kids. We have to get talking and have to be aware of this. Ignorance is not bliss: it's deadly.
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