During pregnancy 

Pregnancy with my second child was much better. My firstborn was diagnosed with Congenital Diaphragmatic Hernia (CDH) at the 20-week scan. This pregnancy, in total, I had five scans, all of them were perfectly fine and showed no signs of distress or illness to the baby. 

After birth 

Tayyibah was born on 22/11/2022 at 17:03 via forceps delivery. She was beautiful and healthy when born. She had her vitamin K injection and a physical newborn examination; all was fine. She fed well and slept as normal. They did a hearing and eye test the next day (23/11/2022), all normal. During the 24-hour period, she only passed urine once, but the team weren’t concerned. 

At home (48 hours) 

We came home on 23/11/2022, late evening. Our hearts were full of love and joy as a family of four. The next day (24/11/2022) was a normal day. The day passed by the normal routine of a newborn. On 25/11/2022 around 2 am, Tayyibah started to cry non-stop; she wouldn’t feed or sleep and vomited once (yellowish colour). She finally fell asleep around 5 am. This was the last time I saw her awake or heard her cry. Tayyibah also looked jaundiced. 

3-day check-up appointment 

The midwife undressed her to weigh, Tayyibah didn’t cry nor was she awake. She did lose some weight, but that’s normal after birth. The midwife did a jaundice test, and it was high enough for them to send us to the local hospital for a proper check. 

Local Hospital (Paediatrics) 

There were two nurses who did a quick heel prick test. Tayyibah didn’t cry or react and was still asleep. The results came quickly. It showed she does have jaundice but not on the borderline to be treated. We went home. 

At home 

Tried to feed Tayyibah many times, but she was so drowsy and fed maybe not even 5 minutes. She opened her bowels a few times but showed no sign of urine for 12+ hours. By evening, one of her hands kept shaking (seizures, which we didn’t know at that time). Sleeping since 5 am, not feeding, hands shaking, not passing urine, and the last symptom was her chest felt cold to touch. After calling the postnatal ward two times, they finally said to bring her in. Three different NHS services in one day, and yet nobody noticed how poorly my daughter was until the very last moment of begging to be seen. If I had kept Tayyibah at home for another day, she wouldn’t be here today. 

Local Hospital (Paediatrics) 

After trying many times to get a body temperature, it showed 35 degrees Celsius. They placed her in an open incubator with a radiant heat element above. Her heart rate was also fast. Her hands were still shaking, and she was still asleep, no sign of alertness. Neonatal doctors were called, and she was taken to NICU. She was in a coma. 

Local NICU 

In NICU, they started all their observations. She was on a high-frequency ventilator, cardiopulmonary monitor, blood pressure monitor, intravenous line, umbilical catheter, and nasogastric tube. Around 12 am (26/11/2022), they led her first ammonia sample (441). The normal level for ammonia ranges from 0–40 umol/L. Checked at 2 am, ammonia level was 354. Ammonia checked again at 11 am and was 970. Tayyibah was deteriorating. They contacted the specialist children’s hospital in London, and once a bed was available, she was blue-lighted there by ambulance. 

Specialist Children’s Hospital (NICU) 

On admission, she was hypotensive and required fluid boluses (25mls/kg) and started on peripheral nor-adrenaline, gradually weaned off and had been cardiovascularly stable with low lactates. Admitted intubated and ventilated on minimal ventilatory support, this was weaned and she was successfully extubated with adequate gaseous exchange. 

Tayyibah had continuous venovenous hemofiltration (CVVH) from 7 pm to 5 am (27/11/2022), a total of 10 hours. After the filtration, the ammonia came down to normal levels (30 umol/L) and was kept normal until the end of the admission. 

She had an electroencephalogram (EEG), which showed minor changes likely related to the recent history of hyperammonemia but no EEG evidence of a marked alteration of cerebral function or epileptiform activities. Tayyibah had a Hickman line inserted in the right arm (29/11/2022), making it easier to draw blood frequently for checks. 

Moving to the ward 

Tayyibah was moved to the metabolic ward. Ammonia levels were maintained after initiating feeds at 170 ml/kg/day. If Tayyibah wanted a top-up, she had a special non-protein formula. Her milk intake was either oral or through a nasogastric (NG) tube if she didn’t finish. Tayyibah had blood transfusions on two different occasions and started on iron supplements. On 02/12/2022, her right foot appeared more swollen than the left one. An ultrasound showed a clot in the right groin. For this reason, Tayyibah started subcutaneous Dalteparin, which was maintained for 12 weeks. 

My husband and I were sat down by a group of consultants, metabolic nurses, and dieticians. We were told about her condition: Argininosuccinic Aciduria (ASA), a rare urea cycle disorder (UCD). We are the carriers of this metabolic condition and passed it onto Tayyibah. 

ASA: When the body digests protein, it’s broken down into amino acids. Some of these are converted into a toxic substance called ammonia, which is removed through urine. This is usually done by the urea cycle, but because of an enzyme deficiency, Tayyibah wasn’t able to urinate out the ammonia. It accumulated in her bloodstream, making her very poorly and causing brain damage. 

Reunited at home once again 

Tayyibah was discharged on 12/12/2022. At home, everything was so complicated and stressful. The first few months were very challenging. Tayyibah had four types of medication three times daily, two injections for her clot, weekly blood tests and dressing changes, and endless hospital appointments. 

From 2022 to 2024, Tayyibah did really well and maintained her ammonia levels. She had many hospital admissions due to infections, colds, and fevers but was managed with antibiotics. New research was found in 2023 from abroad showing promising results in neurological improvement. For this reason, she was put on the waiting list for a liver transplant. 

The Present (2025) 

Tayyibah is now two and a half years old. She has global developmental delays. She has a gastrostomy tube to help with her feeds. She had a liver transplant on 16/01/2025 after waiting one year and one month. She is recovering well and no longer has protein restrictions. She will be on lifelong medications to prevent organ rejection. She is on the waiting list to join nursery, possibly by the end of this year. 

Despite being immunocompromised and having frequent ear infections, colds, and coughs, Tayyibah remains a very outgoing little toddler. She loves to explore and is well-behaved. We have noticed improvements in her communication—she is more verbal and has a better understanding now. We do not know what the future holds for her, but we try our best to live in the moment. Our faith has brought us this far, and we are very grateful.