Little Charlie Rocks
and Little Matthew Rolls
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Complications of Prematurity
There are so many complications of preterm birth, so for this site, we are going to focus on the complications as they pertain to Charlie & Matthew.

Respiratory Distress Syndrome
Respiratory distress syndrome (RDS) is a breathing problem that sometimes affects babies born about 6 weeks or more before their due dates. Their lungs aren't developed enough to make surfactant (sur-FAK-tant). Surfactant is a liquid that coats the inside of the lungs and keeps them open so that the baby can breathe in air once he or she is born.

Without surfactant, the lungs collapse and the baby has to work hard to breathe. The baby might not be able to breathe in enough oxygen to support the body's organs.

Most infants who develop RDS show signs of breathing problems at birth or within the next few hours. If they're not given the right treatment, their brains and other organs may suffer from the lack of oxygen.

The twins were immediately put on surfactant therapy.  Surfactant is given until their lungs developed enough to start making their own surfactant. Surfactant usually is given through a tube that's attached to a breathing machine. The machine pushes the surfactant directly into the baby's lungs.

Surfactant may be given right after birth in the delivery room to try to prevent or treat RDS. It can be given two to four more times over the next few days, until the baby is able to breathe on his or her own.

Babies with RDS often are put on a machine that helps them breathe until their lungs have developed enough to start making their own surfactant. Until recently, these babies usually were put on a mechanical ventilator that was connected to a breathing tube that ran through the baby's mouth or nose into the windpipe.

Today, more and more babies are receiving breathing support from a nasal continuous positive airway pressure (NCPAP) machine, which pushes air into the baby's lungs through prongs in the nostrils.

Stridor & NP Reflux
Stridor is a high pitched sound resulting from turbulent gas flow in the upper airway. It may be inspiratory, expiratory or present on both inspiration and expiration. It can be indicative of serious
airway obstruction from severe conditions such as epiglottitis, a foreign body lodged in the airway, or a laryngeal tumor. Stridor is indicative of a potential medical emergency and should always command attention. Wherever possible, attempts should be made to immediately establish the cause of the stridor (e.g., foreign body, vocal cord edema, tracheal compression by tumor, functional laryngeal dyskinesia, etc.) That examination requires visualization of the airway by a team of medical experts equipped to control the airway.

Anemia
Iron deficiency anemia (IDA) IDA is the most common type of anemia.  IDA happens when you don't have enough iron in your body. You need iron to make hemoglobin.  The twins received several blood transfusions.  The Anemia was due to frequent lab draws and decreased production.

Intraventricular Hemmorage (IVH)
IVH is bleeding occuring in the inner part of the brain near the ventricles, where premature babies have blood vessels that are particularly fragile and prone to rupture.  IVH's are given a grade, depending on their location, size and severity.

Matthew suffered a grade II bleed and Charlie had a grade IV bleed.  The neonatologists told us that Matthew's shouldn't cause and long-term handicap risks.  Charlie, on the other hand, suffered the most severe bleed.  His bleed was on the right side, and subsequently he ended up with PVL and a cyst below the right ventricle. 

Periventricular Leukomalocia
PVL is a result of a severe IVH, often where a babies brain tissue has been permanently damaged.  Cysts, spots where brain tissue has been injured, begin to develop from two to six weeks from the initial bleed.  Later, they may fuse together, forming areas of calcification or scaring.  These cysts are called PVL if they occur in the white matter of the brain, near the ventricles.  Unfortunately, no treatment can regenerate damaged brain tissue and there is a high risk of a later developmental deficits.

Cerebral Palsy
As a result of Charlie's PVL, he developed Cerebal Palsy, a condition in which a person has difficulty controlling his/her voluntary movements.  It is the most common consequence of PVL.  The legs are most commonly affected in preemies, because the nerves controlling leg movements pass closest to the ventricles.   When PVL is more extensive, the nerves controlling the arms, or even the face, may be involved.

Apnea & Bradycardia
Apnea is a pause in breathing that has one or more of the following characteristics:

  • Lasts more than 15-20 seconds
  • Is associated with the baby's color changing to pale, purplish, or blue
  • Is associated with bradycardia or a slowing of the heart rate

Bradycardia is a slowing of the heart rate, usually to less than 100 beats per minute for a premature baby. Bradycardia often follows apnea or periods of very shallow breathing. Sometimes it is due to a reflex, especially with the placing of a feeding tube.

Premature babies have immature respiratory centers in the brain that "forget" to tell the baby to breathe. Premature infants normally have bursts of big breaths followed by periods of shallow breathing or pauses. Apnea is most common when the baby is sleeping.

Hydrocephalus
Hydrocephalus occurs when excess fluid builds up in your brain, most often because of an obstruction preventing proper fluid drainage. The excess fluid can push fragile brain tissues up against the skull — causing brain damage and, if left untreated, even death.

Once known as "water on the brain," hydrocephalus is sometimes present at birth, although it may develop later. About one out of 500 children are born with the disorder. The outlook for people with hydrocephalus depends on how quickly the condition is diagnosed and whether any underlying disorders are present.  The signs and symptoms of hydrocephalus vary by age group and disease progression. In infants, common signs and symptoms of hydrocephalus include:

  • An unusually large head
  • A rapid increase in the size of the head
  • A bulging "soft spot" on the top of the head
  • Vomiting
  • Sleepiness
  • Irritability
  • Seizures
  • Eyes fixed downward (sunsetting of the eyes)
  • Developmental delay

The most common treatment for hydrocephalus is the surgical insertion of a drainage system, called a shunt. It consists of a long flexible tube with a valve that keeps fluid from the brain flowing in the right direction and at the proper rate. One end of the tubing is usually placed in one of the brain's ventricles. The tubing is then tunneled under the skin to another part of the body where the excess cerebrospinal fluid can be more easily absorbed — such as the abdomen or a chamber in the heart.

People who have hydrocephalus usually need a shunt system for the rest of their lives, so additional surgeries may be needed to insert longer tubing to match a child's growth. Revisions to the shunt also may be needed if the tubing becomes blocked or infected.

Another surgical option — ventriculostomy — is sometimes used when there's an obstruction of flow between ventricles. In the procedure, your surgeon makes a hole in the bottom of one of the ventricles, to allow the cerebrospinal fluid to flow toward the base of the brain, where normal absorption occurs. 

Retinopathy of Prematurity (ROP)
Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness. ROP was first diagnosed in 1942.

ROP occurs when abnormal blood vessels grow and spread throughout the retina, the tissue that lines the back of the eye. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. Retinal detachment is the main cause of visual impairment and blindness in ROP.

Several complex factors may be responsible for the development of ROP. The eye starts to develop at about 16 weeks of pregnancy, when the blood vessels of the retina begin to form at the optic nerve in the back of the eye. The blood vessels grow gradually toward the edges of the developing retina, supplying oxygen and nutrients. During the last 12 weeks of a pregnancy, the eye develops rapidly. When a baby is born full-term, the retinal blood vessel growth is mostly complete (The retina usually finishes growing a few weeks to a month after birth). But if a baby is born prematurely, before these blood vessels have reached the edges of the retina, normal vessel growth may stop. The edges of the retina—the periphery—may not get enough oxygen and nutrients.

Scientists believe that the periphery of the retina then sends out signals to other areas of the retina for nourishment. As a result, new abnormal vessels begin to grow. These new blood vessels are fragile and weak and can bleed, leading to retinal scarring. When these scars shrink, they pull on the retina, causing it to detach from the back of the eye.

 ROP is classified in five stages, ranging from mild (stage I) to severe (stage V):

Stage I — Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.

Stage II — Moderately abnormal blood vessel growth. Many children who develop stage II improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.

Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and "plus disease" develops, treatment is considered. "Plus disease" means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.

Stage IV — Partially detached retina. Traction from the scar produced by bleeding, abnormal vessels pulls the retina away from the wall of the eye.

Stage V — Completely detached retina and the end stage of the disease. If the eye is left alone at this stage, the baby can have severe visual impairment and even blindness.

Most babies who develop ROP have stages I or II. However, in a small number of babies, ROP worsens, sometimes very rapidly. Untreated ROP threatens to destroy vision.

Neonatal sepsis
Neonatal Sepsis is a blood infection that occurs in an infant younger than 90 days old. Early-onset sepsis is seen in the first week of life. Late-onset sepsis occurs between days 8 and 89.  Matthew suffered this infection within the first two weeks.  A number of different bacteria, including E.coli, Listeria, and certain strains of Streptococcus, may cause neonatal sepsis.

Neonatal Hyperbilirubinemia
Newborn jaundice is a condition marked by high levels of bilirubin in the blood. The increased bilirubin cause the infant's skin and whites of the eyes (sclera) to look yellow.  Often, special blue lights are used on infants whose levels are very high. This is called phototherapy. These lights work by helping to break down bilirubin in the skin. The infant is placed naked under artificial light in a protected isolette to maintain constant temperature. The eyes are protected from the light. The American Academy of Pediatrics recommends that breastfeeding be continued through phototherapy, if possible.

In the most severe cases of jaundice, an exchange transfusion is required. In this procedure, the baby's blood is replaced with fresh blood. Recently, promising studies have shown that treating severely jaundiced babies with intravenous immunoglobulin is very effective at reducing the bilirubin levels to safe ranges.

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