Baby Enid’s Life-Changing Surgery

In Davao City, Philippines, Cielo Siega, one of my dearest friend shares the story of her newborn baby...

Born January 6^th 2018 my second baby, Enid Zephyrine Saligumba Siega. We have been waiting for her for the past 9 years with highest hopes and prayers. With an all clear from the hospital, we went home happy and thankful. But then, I’ve noticed a slight discoloration and sort of “raw” lump at the bottom of her back. Immediately, we decided to consult the paediatrician and she referred us to a neurosurgeon for a proper diagnosis. It was then confirmed that our little Enid has a condition called Menigocele, a moderate case of Spina Bifida also known as “split spine”. The neurosurgeon affirmed us that it is nothing serious, as the condition can be surgically repaired if needed.

Mid-April of 2018, Enid suddenly developed intermittent fever and restlessness. As a mother, I then rushed her to the doctors and asked for some tests done. With slightly elevated white blood cells, the doctor diagnosed her with mild infection possibly due to a developing cough (there was no cough as I’ve observed) but we trusted the doctor’s words anyway. And so we followed the prescription with antibiotics and close-monitoring with her on and off fevers. By the end of the month, she was still having these fevers. This is not normal anymore.

So came the first of May, we rushed Enid to the hospital as her focus and consciousness was changing. At the emergency department, we were told that our baby was having quite rare and confusing symptoms of seizure. The doctors and nurses came to decide that she should be intubated as her oxygen levels are dropping by each seizure episodes; however the oxygen mask was enough to help stabilize her oxygen levels. She was in a critical condition; intravenous lines were established as she needed continuous seizure medications and antibiotics. She was still having short seizures despite the medications given, the nurses that were attending to her were a bit perplexed as Enid’s body movements and twitches were considered as seizure symptoms. The following day, the neurologist ordered a cranial ultrasound, and it confirmed the tentative diagnosis that she has Bacterial Meningitis with Moderate Hydrocephalus. The doctor mentioned that the hydrocephalus could have caused by her Meningocele. We stayed in the paediatric emergency unit for two days where she needed more tests done and was closely monitored by the staff.

The anti-seizure medications caused Enid to be more drowsy and lethargic, thus she got an oral gastric tubing inserted and can only be fed 30cc of milk every 4 hours. This was not easy as Enid usually consumes more than that, but we had to be cautious as we also did not have much choice.

With limited resources, we had to get transferred to the charity ward where the situation was not restful. The environment itself was not conducive for healing at all, but we had to get Enid’s treatment as soon as possible. As we were admitted at a public hospital, sharing beds with other paediatric patients was quite common. Acquiring more health problems within a crowded hospital is impossible to avoid, Enid developed coughing and had to get more antibiotics prescribed. Ceftriaxone, Clindamycin, Midazolam and Phenytoin were added to the list.

Days dragged on, what a difficult situation but we had to stay strong with prayers and help from our family. We were thankful that the staffs were helping as much as they can too. The doctors mentioned that Enid might also have symptoms of Cerebral Palsy but no diagnostic tests were suggested as of yet. With continuous administration of intravenous medications, Enid’s veins became inflamed, and we’re advised to get a cut down procedure for a more reliable and stable line. So on May 5^th, we allowed for the procedure to be done. It was a success, no more problems upon giving her medications.

Another CT Scan was done to check the severity of her condition, would cost us P7, 750 it was not cheap. Not for us anyway, I work as a public school teacher and my husband, Ernesto works at a local printing shop. We did not have many resources, so we opted and applied for different financial assistance. The CT Scan result showed that she still has the Bacterial Meningitis and this time with Severe Hydrocephalus and Brain Abscess on the Temporal region of her brain. More medication had to be added to her list of prescriptions; Cefepime, Metronidazole and Mannitol.

With her cares and medications still being continued, we have noticed that she cannot focus her eyes properly and her head movement were getting weak. We asked for an ophthalmologist’s opinion and got told there was nothing wrong with her eye functions; but because of her Hydrocephalus, the pressure inside her brain was affecting her physical functions.

End of May is approaching and here we are still at the hospital, we basically had to live here with what we have at the moment. She was having fevers again so the doctors decided to have her IV line changed to another local site. Her antibiotics are now with Meropenem, Amikasin, Fluconazole, Vancomycin. With more meds such as Diphenhydramine, Dexamethasone, and Phenytoin to make sure that the brain abscess is well targeted. Mannitol is still being given to lessen the brain pressure.

June 1^st, we had a follow up MRI Scan. Still, Bacterial Meningitis with Severe Hydrocephalus. But this time with no visible symptoms of the brain abscess, further tests will have to confirm it. With the change of her intravenous line to her extremities, Enid is now more restless than the usual. Having acquired cough and cold within the hospital premises, we had to send her for chest x-ray and prescribed yet another antibiotic (oral) medication and routine nebulisation every 4-6 hours. Mid-June, more tests were done to check her improvements. Unfortunately, Enid caught Measles from another sick child within the room. Never ending health issues, this is just heartbreaking.

Last week of June 2018, they took a Cerebrospinal Fluid sample to check for infection. Thank God it was clear this time. The neurosurgeon informed us that little Enid will be needing a more permanent solution for her Hydrocephalus. To regularly remove the excess fluid in her brain, she will have to have a Shunt implant to lessen the swelling and pressure as she grows up. The shunt will help her (and us) live normally as possible. . The neurosurgeon will discuss more about the procedure soon as we are ready. Unfortunately, this certain medical intervention is not done for free. We will have to pay at least P25,000 ($750 NZD) excluding the medications, and all other expenses. That is about two months worth of my husband’s pay check; we simply don’t have this kind of money lying around.

Our little angel is enduring all these heavy painful medications just to fight for her delicate life, it is heart-wrenching. But we all have to do our best for our children. We had to leave our first-born Erin, temporarily to the care of my mother. Being away from home this long with just the hospital facilities to make use, we are all exhausted. But we have no right to give up, and we will not. We believe that our God is bigger than our problems. We had to keep moving. At this point, Ernesto and I are taking turns in looking after Enid at the hospital. One of us will have to give up our full time job in order to cater Enid’s needs, Ernesto will resign and I will have to keep working as my job has more stability than his.

(Baby Enid's latest photo July 01, 2018)

We are now approaching the month of July, and all her medications are still being administered. We are hoping that out baby girl will be healed and we can go home with a healthy child. Blessings will come for those who ask, says the Lord. We are thankful for your kind thoughts and prayers, will keep the faith. God bless us all!

Sincerely,

Cielo Siega,

Enid’s Mother