Having a full term NICU baby: It is more common than you think
Do you know that 60% of NICU admissions are with babies who are born at full term (37 weeks+)?
I didn’t.
And most people don’t.
There is a huge misconception that only premature babies need neonatal care, however we need to break down this stigma and we need to shed light on the fact that a lot of the babies who need neonatal support are full term.
What are the key things that parents of full term NICU babies say they struggle with, we asked our community:
Underrepresentation
One main thing that parents in our community have said that they struggle with when it comes to having a full term NICU baby is feeling underrepresented in NICU resources and materials and in NICU communities. Quite often all of the images used are of premature babies, the literature is often directed at babies born before 37 weeks, with a big gap in support for full term babies. There are so many common feelings you may have as a full term NICU parent, but there are key differences in how you look after your baby and how they present themselves in the units, which need to be discussed.
Comparison
Quite often people talk about comparison and the fact that in NICU communities, they invalidate their own experiences as a parent of a full term baby. Sometimes, not always, but full term babies stays in NICU are shorter than premature babies. It is easy and normal to compare yourself to someone else's experience, but don’t let it minimise your own pain. Please erase the word “only” from your vocabulary when it comes to talking about your admission to NICU. A NICU stay, no matter the duration can be traumatic.
Things changing quickly
For many full term parents, there was no preparation or even thought about the NICU. The process of giving birth and then having your baby taken to NICU, when you thought that you were going to be going home within a couple of days is incredibly shocking, numbing and traumatic. Because having a full term baby in NICU is not spoken about, it is so often such a huge shock for people when their baby needs support.
Being a “big” baby
A full term baby, even a small one, will weigh significantly more than a premature baby and in comparison may look “big”, they may even be referred to as a “big baby”. This can feel hard for full term parents, it may feel like you are out of place. Parents talk about it feeling hard that their baby is louder than other babies and not feeling able to soothe them properly with them being in a cot/ incubator. It may also be difficult because often “big babies” can still be very small and are often poorly and vulnerable and in need of intensive care.
How poorly your baby is
The size of your baby does not predict how well or unwell they are. The gestation of your baby does not predict how well or unwell they are. Full term babies can be incredibly poorly and need a significant amount of help to be able to become well enough to go home, including surgeries, procedures and medications. Please do not assume a baby's physical state by the gestational age they are born at.
Some reasons why full term babies in our community have needed NICU admissions:
Hypoxic-ischaemic encephalopathy (HIE)
Hypoglycaemia
Beckwith-wiedmann syndrome
Congenital heart disease
Jaundice
Sepsis
Underdeveloped bowel
Down's syndrome- complications
Birth defects- esophageal atresia, tracheoesophageal fistula, coarctation of the aorta
Inhaled meconium
Groups B strep
Meningitis
Respiratory issues
Rhesus disease
Cardiac arrest
Spina bifida
Lesions on lungs
Maternal sepsis
Hemothorax
Bowel blockage, kidney problems, block in urethra
Pneumothorax
Underdeveloped organs
Neonatal abstinence syndrome- drugs, prescribed or self medicated
Inhaled amniotic fluid
BRUE- Brief resolved unexplained event- The diagnosis of a BRUE can only be used as a diagnosis if there is no explanation for the event after a thorough history and examination.
Non immune hydrops
Feeding issues
Not holding temperature
Breathing issues
Shoulder dystocia
Hypoxic liver
Hemangioma- internal
persistent pulmonary hypertension
Exomphalos
Herpes simplex virus type 1 (HSV-1)
Congenital diaphragmatic hernia
Hypertonia
Low calcium
Genetic conditions
Hirschsprung's disease
Volvulus
Intrauterine growth restriction
Perinatal stroke
Congenital malformations
Hypotonic
Gastroschisis
Lactic acidosis
Hyperinsulinism
Tracheo-oesophageal fistula (TOF) Oesophageal atresia (TOF/OA)
In this blog post, we hear from three full term parents who wanted to share their stories. Liana and Antonia and Chloe.
Liana Mitrović - Adrian's Story
My son was born at 42 weeks after an uneventful pregnancy. After 30 hours of labour, Adrian was born via emergency caesarean at 3 am on June 6th 2022. My baby boy was fine and I had no complications from the surgery.
The day following birth, my husband and I noticed some odd movements in the arms and legs of our boy. We brought it up to the nurses and they all assured us it was normal baby movements due to an immature nervous system and were preparing to discharge us early. After filming one of the episodes and showing a nurse, they finally called a paediatrician who examined Adrian and took him the the NICU for a spinal tap. They suspected bacterial meningitis. The spinal fluid came back clear and my son continued to have seizures. He was transferred to a children's hospital with a higher level NICU in another city that evening.
After having several head ultrasounds and MRIs, they confirmed Adrian had a stroke due to a large blood clot in his right carotid bulb and the seizures were caused by the damaged brain tissue. The doctors were able to control the seizures and put him on an aggressive anticoagulation treatment which continued for the next several months.
My beautiful baby boy was diagnosed at two days old with spastic hemiplegic cerebral palsy and epilepsy. The neurologist said he would walk and talk but probably much later than normal and they were unsure if he could see. My son spent his first month of life in the NICU. After the seizures were controlled, he was weaned off the sedatives and slowly he woke up. We spent the next several weeks working on breastfeeding together in the hospital in order to be discharged. We were very lucky that our fabulous lactation consultant advocated for a parent bunk for us so I could feed him around the clock.
Adrian is now 15 months old. He has met all milestones early or on time and even began walking at 12 months old. He uses all limbs and he has no issues with his vision. He has not had any seizures since he was one week old. He does minimal therapy and surprises every medical professional he sees. He is smart, funny, sweet, and most of all determined. Adrian has surpassed all expectations given to us by his neurologist. We are so lucky and so grateful for his life. The future is unknown but we have faith our determined little boy will do anything he wants to do."
Antonia - Mia’s Story
I feel sometimes like the whole of my pregnancy was hard, start to finish. I was signed off from work at 18 weeks pregnant as I had chronic back pain anyway and then SPD reared its head. And working in a nursery I just wasn’t fit to carry on.
We were put under consultant care as myself and my partner have a higher BMI so they assumed Mia would have been a large baby and need monitoring and potentially be induced if she grew too big. Now when you get a check up at 28 weeks and they tell you your baby is measuring small, would be hard for anyone to take in. But we thought it odd that they said she would be a big baby and all of a sudden she’s smaller than ‘normal gestation size’ so we upped our visits to weekly scans, and twice a week blood pressure/overhaul checks.
I went for my last midwife check up bang on 38 weeks and my blood pressure was high (I was already on meds for this but it just wasn’t levelling out) so I got sent straight to the maternity unit triage who kept an eye but they couldn’t get my blood pressure down. They then ran some urgent bloods and it showed that I had developed pre eclampsia. I was told then I would be admitted to a ward immediately to start the induction process and I “wouldn’t be leaving hospital without a baby now”
I sat in the triage waiting room until a bed became available around 8pm that night. As soon as I got on the ward the midwife explained what would happen and we started the process.
4 attempts at induction and 5 days later I was taken to the delivery room.
However at 7.47am I was told that baby was no longer coping well and contractions were causing her heart rate to dip. I was then told I’d be prepped for an emergency c section.
At 8.34 I was wheeled into theatre where they administered the epidural and I felt the overwhelming urge to push but I was told it was ‘too late now’ and the c section would go ahead.
Mia was born at 9.06am but was not breathing so needed resuscitation. She came round and I asked for her to be given to her dad as I was shivering so much I was scared I’d drop her.
Dad took her to the recovery bay while the doctors patched me up. It was then a doctor told me I wasn’t actually ready to push earlier. The feeling I had experienced was my placenta giving up and that it was 98% ruptured from me.
An hour after she was born, Mia was feeding but stopped breathing and turned blue.
The nurses on the recovery bay were amazing and brought her back round so calmly. I remember not knowing what to feel at this point. Seeing someone work so hard to bring your baby back. You think at almost 39 weeks you’re out of the woods and there will be no complications.
Mia was taken through to NICU for monitoring. It was there they found her blood sugar levels were so low they were actually undetectable. So she was placed on a glucose drip and given a feeding tube.
She had hourly heel pricks to check her sugar levels. (She didn’t allow anyone to touch her feet until she was about 9 months old!)
She spent 10 days in NICU, 7 of which she had a feeding tube.
On day 4 I was discharged from the hospital. I found myself upset and resenting the midwife on triage who told me earlier that week that I’d be leaving hospital with a baby. But in fact I was going home to an empty cot.
I got home and cried for about 2 hours when it hit me that I was home and my baby wasn’t. It felt like she wasn’t there at all, like we’d lost her.
And I felt awful for thinking that.
She came home after 10 days and we have faced many hospital appointments, including an mri scan.
She was diagnosed with Angelman Syndrome when she was 13 months old which comes with its own host of issues. But overall she is a very happy girl, who turns 2 in 2 weeks!
I am now on antidepressants and have been diagnosed with anxiety, depression and mild PTSD. But we take each day as it comes now.
Just know it is ok to grieve the life you thought you would have.
No matter what feelings you experience, they are valid.
And in your NICU journey, you will never be alone. You’ll come to look at the nurses like family. I still speak to 2 of mias nurses. The day Mia was discharged, one came over and gave me the biggest hug and I remember her words “you did it, you’re going home”
Chloe - Ru’s Story
When our son was born September 2019 we were thrust into parenthood in a very different way than we had expected 24 hours earlier. After all, my pregnancy had been reasonably problem free. Ru was full term, born at 40 + 4 via emergency caesarean and before we could meet him was taken to SCBU. At some point after his birth someone from SCBU came down to tell us he would need to go to NICU due to hypoxic ischaemic encephalopathy. Ru was taken to a NICU unit an hour away at 8am and I wasn’t transferred to him until 1am the following morning. Being separated from him for so long broke our hearts. And I regret every day not discharging myself and going straight to him.
As a nurse I have been to adult intensive care units before and am used to the hospital setting but neonatal intensive care is very different; its dark and open and the babies are all in little cots or incubators. And having a full term baby in a room of tiny premature babies was also different. Ru was ventilated, and was being cooled to try and prevent further brain damage. He was a cheeky boy who wouldn’t stay asleep and needed more and more sedation. We would read to him and help with his cares and after 72 hours he was taken off his ventilator and we were allowed to hold him, there were a lot of tears and it was wonderful to hold him close. It was also really hard, there were babies around us who had been on the ward for weeks and months and weren’t able to be held and we felt the weight of that. We heard discussions about a baby in a cot near us who was very poorly and the parents were making decisions around her passing away and making sure she was comfortable. I know my husband found this particularly hard. We felt incredibly guilty for how well our son was doing. We didn’t want to celebrate his milestones when we knew others were going through so much trauma.
Throughout the 11 days we were in NICU I was repeatedly asked “how long I had to go” by people as I walked to the shop to get food or when I sat in the entrance to the hospital. I wished I could say I was still pregnant, I wanted to be able to get a do-over. I wanted a home birth, and a photo of Rupert lying on my chest after he was born and of my husband standing over us looking at his new family. What I got was a forced photo of me staring at my son in a travel incubator with wires and tubes and my husband looking on distraught.
4 years on and I struggle daily with the feelings of guilt, sadness and grief for what we didn’t have but I also feel immensely proud of what the 3 of us have been through, I feel blessed that we had wonderful NICU nurses and consultants and were able to stay in a charity house next door. I will always be the Mum of a NICU miracle.