We were recently asked to share some material with a hospital for staff training. We thought we’d share it here too for increased awareness.
Molly was born at 37 weeks. She was delivered through a Cat 1 C-Section. Molly was delivered with mum under general anaesthetic. Molly didn’t self-ventilate, was light blue in colour and had poor tone. She made occasional intermittent breaths. At 3 minutes old, her colour was noted to further deteriorate and she stopped breathing. An emergency call was sent out. Her oxygen levels continued to fall. With mechanical ventilation her saturation rose gradually and she ultimately began self ventilating at around 10 minutes old. Whilst suggested by professionals this is typical of a GA delivery – we feel this was the first indicator of CHD.
Immediately after birth Molly couldn't ever latch and could only breast feed through a nipple shield. She would try and feed often but not for very long at a time before falling asleep. She fatigued rapidly when feeding, we understand due to lack of oxygen and increased demand on lungs and heart. A few days after birth she dropped to 5lb 4 which again has been suggested as normal for a newborn.
Molly had a tongue tie which we feel was a further feature with her weight that helped divert possible consideration away from her heart. She had her tongue tie snipped at two weeks old. Molly failed to progressively gain weight and was still only 7lb at 8 weeks old (She fell off the centiles at this point). Mum persevered with breast feeding and expressing milk but also began introducing formula in an attempt improve her weight. Molly was slightly more receptive to bottle feeds possibly through ease of delivery through a bottle teat. When she started having formula she drank slightly more but rarely finished her bottle.
Molly continued to have feeding issues from birth even after her tongue tie was corrected. She still has reduced appetite now post surgery. She remains a very slow, fussy eater.
Molly was often clammy even when she wasn't feeding. This worsened when feeding in the evening. Her hair always looked flat and greasy. This got progressively worse as she got older. Just before her diagnosis at 10 months old this clamminess and sweating had worsened.
Molly always had fast / elevated breathing. It was always over 60 breaths per minute. We identified this to professionals repeatedly - but it was suggested this was acceptable and only marginally elevated. On one occasion mum was challenged by a professional as to why she was counting Molly’s breathing. As Molly suffered regular respiratory infections this helped mask the elevated breathing and strain that her heart and lungs were under.
We now understand Molly was more susceptible to these repeated respiratory infections due to her compromised heart and lungs. We feel professionals could have been more alive to this as we presented her so often with them.
We did notice a blue tinge around her mouth and hands / feet in cold weather. Her hands and feet also appeared “chubby”, even though she was off the centiles. We had put this “chubbiness” down to a baby’s normal appearance but on reflection we feel this was fluid retention.
Molly was always behind with things such as rolling and sitting - perhaps lack of energy or the strain on her heart and not trying to do it. She resisted tummy time - perhaps she found this uncomfortable.
Molly always had disrupted sleep and has woke often since birth. She would typically wake 5-6 times throughout the night. She was often hungry at shorter intervals as she would only feed briefly each time. We became increasingly exhausted and disorientated as time went by. When we tried to raise our concerns we felt increasingly gas lighted by professionals.
We'd purchased a smart sock from 5 months old and had always monitored Molly’s heart rate and blood oxygen levels each night. Her stats were also checked each time we attended hospital. Molly's levels always remained consistent and within acceptable boundaries each night throughout the further 5 months to the point of diagnosis.
Molly also has an undiagnosed neurological condition. This condition comes with a further range of symptoms to those above. We feel this also frustrated her CHD diagnosis. We presented Molly on 26 occasions to professionals after birth and through to the point of CHD diagnosis.
We sensed professionals believed we were burdening the NHS unnecessarily when we continually presented Molly. We were often asked “is she your first” before professionals would reassure us everything was ok. We didn't have the experience of other children to resist this reassurance. Our advice to professionals would be to take time with parents. Listen to them. Their instincts and concerns should be valued. Keep an open mind and don’t jump to conclusions. Remain alive to the fact there may be multiple conditions present simultaneously and symptoms may be blurred across these conditions. Try to resist becoming compassion fatigued. Just because a child has been regularly reviewed by one consultant, or perhaps multiple consultants, critical conditions still may be present. Don’t assume others would have identified things.