My son, post-op, at 3 months in his "first bedroom". Neonatal Intensive Care Unit.
This is my second interview with a pediatric specialist. In this case, the doctor is a neonatologist. That is a pediatrician who does an extra 3-year post-residency fellowship in order to specialize in the intensive care of newborns. Neonatologists care for newborns that are hospitalized due to complications of prematurity as well as full term babies needing critical care, such as those born with serious birth defects needing surgery, such as my son.
On delivering babies early:
Some percentage of babies born at any age will have problems. The more premature a baby is, the more likely the problems. The most common problem is respiratory distress syndrome (RDS). This is a condition where the lungs lack a chemical called surfactant. Near term babies (35+ weeks) with RDS can be some of the sickest babies we take care of. Many of these babies will need to go on a mechanical respirator and some of them will need extra-corporeal membrane oxygenation (ECMO), which is very similar to heart/lung bypass. Most hospitals don’t have the capability to take care of these patients. A typical community hospital has a level 1 neonatal intensive care unit (NICU), which probably does not even have a respirator for a baby and/or the people qualified to operate it.
Inducing a 44-year-old multipara woman carrying a 35-week Down syndrome fetus:
In order to justify an induction at 35 weeks, there has to be a significant risk to the mother’s or baby’s health. Down’s syndrome in itself is not such a reason. There are tests to evaluate lung maturity. They require an amniocentesis, which carries its own risks and are far from 100% accurate.
Sarah Palin states she began leaking amniotic fluid in Dallas 24 hours before she delivered and flew for 8 of those:
Aside from the mess associated with leaking amniotic fluid (was she wearing an adult diaper to catch the fluid? There can be a lot of it), medically, it makes no sense. The longer that the membranes are ruptured, the higher the risk of infection to the mother and fetus. The risk rises more rapidly after 24 hours and mothers ruptured that long should be monitored in a hospital and probably should be given IV antibiotics. Any doctor who tells her patient with ruptured membranes that it’s ok to travel for 10 hours better have good malpractice insurance. Once the membranes rupture, the onset of labor can happen at any time. A woman who has had several children will often have a shorter labor and can deliver shortly after labor begins. This is variable, of course, but who would want to take this risk?
What would happen to a baby born on an airplane:
If a baby was born on an airplane, the odds that someone knows what to do are fairly small and the equipment to handle a delivery will certainly not be available. Most doctors who aren’t in OB/Gyn or Pediatrics haven’t been to a delivery since medical school. They would probably do fine if the mother and baby had no real problems, but in the case of premature baby, possibly infected, possibly with a heart defect and known to have Down’s syndrome, many things could go wrong. At best, the plane would have to make an emergency landing and the mother/baby taken to the nearest hospital.
Delivering in small hospital without NICU:
For a full term baby with no known problems, this is fine because most babies and mothers do well. The equipment and personnel to resuscitate a baby would be there and the baby could be stabilized and transported to hospital with a higher level of care. However, when there are known problems with the baby, it makes no sense to take unnecessary risks that the baby will need immediate intervention that cannot be provided in community hospital.
Delivery of a Ds baby by a Family Practitioner:
This, I have no problem with. A family practitioner (FP) who routinely does deliveries can handle this, as long as there is an OB/GYN back up in case a C-section is needed. Keep in mind that an FP could also help with the resuscitation of a sick baby, but that would divert him/her from the care of the mother and someone’s care would be compromised. Often, there is a pediatrician on call, but they may not be immediately available and would likely get there after the baby had already delivered. Again, this is fine for most cases, but when there are known issues with the baby, it makes no sense.
Down syndrome heart defects :
About half of babies with Down’s syndrome will have a heart defect. Many of these do not cause immediate problems, but will usually need surgical correction in the first year of life and need to be watched closely in the hospital before discharge to determine the timing of follow-up. Of course, this is not true of all heart defects and some will need immediate intervention from a cardiologist and pediatric cardiac surgeon. Not all congenital heart defects can be detected on prenatal ultrasound and it is recommended that all babies with Down’s syndrome have an early evaluation by a pediatric cardiologist. While this can be done in some community hospitals, it isn’t always easy.
There is another condition that occurs more often in babies with Down’s syndrome called persistent pulmonary hypertension (PPHN). This cannot be predicted prenatally and can be very serious. In this condition, the blood vessels in the baby’s lungs are constricted and very little blood flows through the lungs. This means that the baby has a hard time getting oxygen into their blood even if they are breathing normally. The usual treatment ranges from small amounts of supplemental oxygen, above concentration of oxygen in the air, delivered via an oxygen tent or nasal canula, to a mechanical respirator, to ECMO (heart-lung bypass, described above). This is more often associated with premature babies, but can happen at any age.
Photo of Trig seemingly with a nasal canula for oxygen:
If Trig required a nasal canula, there are many possible reasons. The most common would be “delayed transition” where he simply needed some support while he cleared fluid from his lungs. This could be exaggerated in a baby with low muscle tone due to Down’s syndrome. This generally gets better over time, but this is care that is over and above the capability of a level 1 NICU in a community hospital. He could also have some PPHN as I described above or even some RDS due to prematurity.
Taking a 3-day-old newborn to work:
Babies in general are very susceptible to infection. A baby with a heart defect and/or lung disease could get very ill if they get an upper respiratory infection. It is not recommended that newborns be taken out where they could be exposed to people who are sick.
Feeding issues:
The feeding issues associated with Down’s syndrome are usually related to the low muscle tone. Swallowing and breathing are two things we take for granted in a baby. In a premature and/or Down’s syndrome baby, they may not be able to do this right away and may need a feeding tube for a period of time. Often, the cardiac surgeons want a baby to gain weight before they operate on a heart defect. The heart defect can also make it harder for the baby to gain weight with a normal food intake. Oral feedings are often supplemented by tube feedings in these babies.
Down’s syndrome can affect almost any system in the body. They have an increased incidence of intestinal blockages, needing surgery shortly after birth. They can also have abnormalities of the blood. They can have low platelet counts (platelets are the cells in the blood that are involved in forming clots) and have a higher incidence of neonatal leukemia.
The media and the “Spiral of Silence”:
This is out of my area of expertise, but I can say this: Until recently, there was a line of respect for public figures that the media was not willing to cross. A politician’s children were generally off-limits for criticism and that probably explains the silence. However, it seems like everything is fair game these days.
Trig and Trisomy G:
I have never heard Down’s syndrome called “Trisomy G”. A quick Google search tells me that the Merck Manual has that name, but I’ve never heard it mentioned by anyone. We either call it Down’s syndrome or Trisomy 21, as the baby will have three copies of chromosome 21, instead of the usual two.
What a parent names their child is their decision. I’ve seen some crazy names over the years and Trig (Trisomy G?) is no big deal. What would you do if your parents named you “Shi’thead” or “Chlamydia”? Once we had a teen mother try to name her baby “Diarrhea” but we convinced her it wasn’t a good idea. My favorite baby name was pronounced “An-yae” but it was spelled “Etienne”. Apparently, the mother took the wrong name off her Etienne-Aigner purse when filling out the birth certificate. As we often say, “You need a license to drive a car, but not to have a baby.”
Ruffled ear defect:
I don’t know much about this. Generally, when a ear is deformed by the baby’s position in the womb, it will return to a normal shape after a few weeks. Rarely, some splinting is needed to re-shape the ear. This is not the case for developmental abnormalities of the ear. When an ear is malformed, surgical correction is needed to give the ear a normal appearance.
Downs and age:
The incidence of giving birth to a baby with Down’s syndrome rises with the age of the mother. It can be as high as 1 in 60 for a mother in her mid-40s. However, any mother of any age can have a baby with Down’s syndrome. It does happen in teenage mothers, but their risk is more like 1 in 1250.
A hoax?
Has a mother ever hidden her teenage daughter’s pregnancy and birth? Of course, I’m sure this happens all the time. The daughter has the baby and they announce to the world that the mother had another baby. It saves them from difficult questions and possibly shame. I can imagine if a mother is a political figure and an advocate of abstinence-only education, she would not want her teenage daughter getting pregnant and having a baby in the public eye. It could be the end of her political career, or at least her credibility.
I remember hearing that Bristol Palin was out of school for about 6 months due to “mononucleosis”. While mono can make a teenager quite sick, the timing certainly is suspicious and the length of time out is much longer than most cases of mono would last.
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