Prematurity Awareness: IVH

By day 3 of our Micro preemie journey Tyler was diagnosed with Brain Bleeds or Intraventricular hemorrhage I remember going in to see him and a whole team of doctors came over to his bed and asked me if I wanted to sit down. I told them no, but tell me what they wanted to say. I remember them start telling us that he had bleeds. They were using big words and I knew what all the words meant from school but all I heard was " sick, dying, unsure of the future." Of course they were not in one sentence but several sentences. I thought I was going to be sick . I remember asking them if I could sit down. I was going to faint. Doctors and nurses jumped into action and all I could think of was Tyler and Dallas.

What is an brain bleed or IVH?
Intraventricular hemorrhage (IVH) means bleeding into the normal fluid spaces (ventricles) within the brain. IVH is also used to refer to bleeding in areas near the ventricles even if the blood is not within them. The extent of IVH is graded:

• Grade I - Bleeding confined to the tiny area where it first begins
• Grade II - Blood is also within the ventricles
• Grade III - More blood in the ventricles, usually with the ventricles increasing in size
• Grade IV - A collection of blood within the brain tissue, also called intraparenchymal echodensities because of its appearance on the ultrasound picture. This can be seen with grade I, II, or III hemorrhages. It reflects brain injury.

Grades I and II are most common. They usually do not cause identifiable brain injury. The blood is slowly absorbed by the body. Babies with grade III IVH are at increased risk of brain damage, but many are normal or near normal. Babies who have needed treatment for hydrocephalus, those with continued enlargement of the ventricles, and those with grade IV IVH are at a very high risk for permanent brain injury.
Ty was diagnosed with a 3 and a 4. Obviously not the best case scenario. We knew that. It was a done deal there was nothing we could do to change that. At the time we were given worst case scenario. That is what we had to be given. That is all they knew to expect. Text book case.

Why do these little babies get bleeds?

The brain is still developing. The area where IVH usually begins has a very fragile network of tiny blood vessels. These burst easily causing the bleeding. The more premature and the sicker the baby is, the greater the risk that he/she will develop IVH. The infants at the highest risk are those weighing less than 1000 grams (2 1/4 pounds).

Ty was 750 grams and a whooping 25 weeks. We had no advance warning. We were prime candidates for bleeds.

Not only does bleeds cause brain damage it also has other effects that come with it. Who knew we would be lucky enough to experience that "roller coaster" as well!

Complications are most common with grades III and IV IVH. The most frequent complication is hydrocephalus or too much fluid collecting in the ventricles. This extra fluid may cause:

• The baby's head to grow more rapidly than normal
• Pressure on the baby's brain

By the time he was ten days old doctors notice his head growing at an increasingly fast rate. The neonatal team sent our information to the children's hospital to decide if we were going to need to be transferred.

There are not many options for treating Hydrocephalus. These are the things that are available:

• Medicines to decrease the amount of spinal fluid that the brain makes. Many infants do not respond well to this treatment.
• Frequent lumbar punctures (LPs). In an LP, a needle is put into the spinal canal in the lower back and fluid is withdrawn. This therapy will not work if a clot is blocking a channel. The baby will need another way of removing the fluid like a reservoir or shunt.
• A reservoir. This is a tube placed into one of the larger ventricles that then connects to a chamber. The chamber may be placed under the scalp or outside the scalp. Whenever necessary, fluid can be withdrawn from the chamber by a needle. This is usually a temporary solution to the problem and the baby may need to have a shunt placed later.
• A shunt. In this surgical procedure a tiny tube is placed into one of the two larger ventricles. It attaches to another longer piece of tubing. This connection is behind the ear, under the skin. The longer tubing continues under the skin, down the neck and chest to the baby's abdomen where the fluid can be absorbed. Sometimes a baby will need a temporary shunt first. The temporary shunt connects the fluid from the ventricles to the space under the scalp (subgalial shunt). When the baby is larger or healthier this is replaced by the permanent shunt to the abdomen.

The option we were given was a reservoir. Instead of shunting we were hoping to get his brain working and draining the fluid on its own. It was a scary time. Full of the unknown.

For those experiencing a baby with bleeds as they get older a few things will show up that will raise a red flag to you that there is something wrong.

Serious abnormalities that may appear are:

• motor (movement) problems:
• tight or stiff muscles
• slow to crawl, stand, or walk
• abnormal crawling, toe walking
• moving one side more than the other
• frequent arching of the back (not just when angry or at play)
• slow mental development:
• does not listen to your voice by age 3-4 months after hospital discharge
• does not make different sounds by 8-9 months after discharge
• doesn't seem to understand or say any words by 12-13 months after discharge
• seizure also called convulsions
• deaf
• blind

Less serious problems appear more slowly, are more difficult to detect, and may not be obvious until preschool or grade school. These can include:

• poor coordination or balance
• specific learning disabilities (math or reading)
• very short attention span
• behavioral problems
• difficulty with activities that require coordination of the eyes and hands, for example, catching a ball or copying a simple drawing
• need for glasses

No doctor or nurse can tell you what your baby will be like. No bleeds are exactly the same. No one can tell you. It is the phrase that would make you rich in the NICU " wait and see."

Next up! Our transfer to PCMC and surgery again!