My Baby's Journey with Newborn Aortic Arch Expansion, Ischemia, and Hypoxia

I've been through my fair share of ultrasound scans on my kid in the first year of life. We've done over a dozen NSG scans, and they're usually done from birth until the fontanel closes. After that, you can switch to a CT or MRI scan of the head.

The fontanel closes at different times for everyone. Some kids close it earlier, while others close it later. That determines how old your kid can be for an NSG scan. We managed to get it done by 8 months, after that the fontanel closed.

My kid cried during all the NSG scans, and it was impossible to calm them down. They didn't respond to pacifiers. During the procedure, I had to hold them because they wouldn't get distracted.

Although NSG scans are painless, it's an ordinary ultrasound with a sensor. But my kid was scared and uncomfortable with the gel on their head and the sensor touching it. Luckily, it didn't affect the visualization, and the doctors could see everything clearly.

When did we discover the problem?

We discovered the problem during pregnancy. I was sick with a cold for over a month. After I recovered, I did an unplanned screening, and we found an asymmetry in the ventricles. Before that, all our screenings were normal.

Asymmetry of the lateral ventricles on screening

The doctor sent me to the Republican Medical Genetics Center for an expert screening, where everything was confirmed. There's a lot of info about ventriculomegaly online.

Expert screening at the Medical Genetics Center

The doctor also sent me to a geneticist, who prescribed Acyclovir treatment.

Geneticist's conclusion

We had a C-section almost at 38 weeks. The baby was born with hypoxia and spent 5 days in the NICU under oxygen therapy, and we treated them for pneumonia for two weeks.

The first NSG scan was done in the hospital, and the lateral ventricle was still enlarged.

Ultrasound of the head in the hospital

The discharge note mentioned ischemia and angiospasm of the retinal vessels. We were recommended to continue treating the baby's anemia.

Discharge note from the hospital with diagnoses

The baby was born with a familiar head turn to the left and deformation in the occipital area. The doctors prescribed a Shantz helmet.

At the 1-month NSG scan, we found a cyst and asymmetric enlargement of the ventricles. The only treatment we'd done so far was Elkar.

Neurosonography at 1 month

At that time, we were in the hospital, where we already saw problems with muscle tone, and there was also severe anemia, and it almost came to blood transfusion. We started actively raising hemoglobin, and glycin was also prescribed.

Neurologist's examination at 1.5 months showed muscle dystonia. Based on the results of the previous NSG, Diakarb + Asparcam, Korteksine, electrophoresis, magnet, and massage were prescribed. Treatment was done in the hospital. Plus, there were paraffin socks.

After the completed treatment at 3 months, a control NSG was done - already the lateral ventricle was expanded not only. Signs of the previously suffered ischemia remained. Also, two cysts were seen.

Uzi head at 3 months

Again, with the result of NSG, we were at the neurologist (at 3.5 months), and again dystonia - tone disorder syndrome. Treatment was prescribed: Diakarb + Asparcam, Aktovegin, magnet, electrophoresis, and massage.

We did everything, except for Aktovegin.

I myself start to notice that the baby's reflexes don't fit into the norms.

NSG at 5 months - everything was still ventriculomegaly, and expansion of the subarachnoid spaces and interhemispheric fissure. But the cysts passed.

Uzi head at 3 months

At 5.5 months, we again saw the neurologist. The doctor also noticed that the reflexes don't fit into the norms. The consequences of hypoxia are showing themselves. From the prescribed treatment, we went through:

- Cerebrolysin injections, after which we took Cerascon.

- Massage with an emphasis on back muscles (stimulated), while lower limbs were relaxed. That is, there was tone in the legs, and the back muscles were weak.

- Electrophoresis and paraffin socks. SMT of back muscles in our city is not available. Instead, a magnet on the ShOP was used.

- The Shance collar was returned, as the usual head turn to the left did not pass.

Treatment was done in the hospital.

Conclusion of the neurologist at 5.5 months

Problems were also seen by the orthopedist. Usually, everything that the neurologists said during the exams was later confirmed by the orthopedist.

After the completed treatment at 7.5 months, rotations from the back to the stomach appeared.

According to NSG at 8 months, it was seen that ventriculomegaly did not pass, and expansion of the interhemispheric fissure and subarachnoid spaces also remained. We were sent to a neurosurgeon, and another course of Korteksine was also prescribed.

8-month-old ultrasound

We also did an electroencephalogram (EEG) because of all the nootropics we gave him. It was a short one, just 20 minutes. They didn't find any epiactivity. For a more accurate result, it's better to do an EEG for at least 2 hours, or even overnight.

We went to see a neurosurgeon at a pediatric hospital. He recommended we do a CT scan of the head after a year. He also prescribed magnesium in ampoules.

We also visited an osteopath, after which our son's reflux stopped, and his muscle tone improved. Before that, he was all tense, and his movements were stiff. But after the session, he became more flexible, and new skills started to appear. I think the osteopath really helped us.

At 8 months, the eye doctor still saw angiopathy of the retinal vessels on the retina exam, which is a sign of the hypoxia he experienced earlier.

Angiopathy of the retinal vessels on retina exam

We didn't do any more ultrasounds of the head - the fontanelle had closed.

The skills didn't develop exactly as we'd hoped, but they still started to appear over time.

At 9.5 months, he got a plastic wound (a parotid wound).

At 10.5 months, he started standing at a support, then he started walking along it.

At 11 months, we went to see a neurologist. Based on the previous EEG, the doctor saw ventriculomegaly, and based on the exam, he saw a syndrome of tone disorders. The only thing left was hypoxic-ischemic brain damage.

We did all the prescribed treatment: Pantogam, Dibazol, calcium chloride, and massage. We did it all.

After a year, we stopped giving him nootropics and stopped doing massage. Over the next 6 months, our son developed new motor skills:

- at 1.1 years, he sat down;

- at 1.2 years, he got on his hands and knees;

- at 1.3 years, he started standing for a long time without support;

- at 1.4 years, he started standing up without support and took his first steps.

For a long time, he walked slowly and carefully, getting used to the new skill. Over time, he started running quietly and then walking more confidently. The orthopedist no longer saw any problems.

The usual head turn resolved, but the occipital part of the head didn't fully align, but it did improve.

We didn't do any CT or MRI scans of the head.

We didn't follow the vaccination schedule, and the first Pentаксим was done at 11.5 months. But we did all the necessary vaccinations gradually.

CONCLUSION:

Neurosonography is a super helpful way to diagnose brain issues in little ones under a year, and it's great that we caught our son's problems early. It's a shame that this procedure can only be done before the fontanel closes, or we would've had more chances to catch everything earlier.

We did the EEG both privately and through the OMS. The average cost of a neurosonography is 1,000 rubles.

Not all the conclusions from the EEG and neurologist are included in this review, as we often went to see doctors for a second opinion.