This week my beautiful, happy terror of a baby will turn 2. In one of my earlier posts Belly Buttons I wrote about the rare condition doctors identified when I was pregnant with him called an umbilical vein varix. Affecting just a tiny number of pregnancies we didn’t have a lot of knowledge from what would be the expected outcome of my pregnancy. To explain the umbilical vein varix as best I can, would be to describe it as an annerysum where the chord entered his body through the “belly button.” I was monitored every single day for the last trimester of my pregnancy with no certainty of whether he would be healthy once he was born. I was to have an elective C- section 4 weeks before as the main concern was the blood flow turning “torrent” (irregular) in the vein and it affecting his heart. As much as they tried to console us, we knew ultimately what the outcome could be and every day leading to the birth was unbearable.
On the day of his birth the C-Section went extremely well and I could never explain the overwhelming range of emotions and relief I felt when they placed him in my arms, after thorough checks from a team of advanced specialists. They summarised that the vein varix hadn’t actually affected his health in any way. I could finally breathe.
Born 4 weeks early he weighed a chunky 8 lb 12. He was perfect in every way and I couldn’t take my eyes off of him, my little miracle child. I laughed as he made little cooing noises at me, he seemed so knowing already and he had only been here a few hours!
Out of recovery my husband and I doted over him on the mother and baby ward. The midwife came to check on us and I don’t know why but the cooing noise was slightly starting to niggle at me. It was such a small sound but he was now around 6 hours old and still hadn’t took a feed. I felt a bit silly, he was my third baby, I knew sometimes it took a while but all the same I thought I would mention it.
The midwife asked if she could take him to one of the examining rooms. I couldn’t leave my bed because of the C-section so my husband went. I didn’t see my baby for another 12 hours as he was whisked at lightening speed up to the Neonatal Intensive Care Unit. My husband came down to explain what was going on, to which I ordered him back to the baby’s bedside. Laying in that bed, knowing I couldn’t hold my baby, with the 5 other mums with their newborns around me was one of the longest and saddest nights of my life. The next morning as soon as the nurses said I could get out of the bed and walk, I was up. Every single step was agonisingly painful as I walked the corridors and 4 floors to the NICU ward.
There he was. The largest baby in the NICU, my little boy full of tubes and surrounded by monitors. I didn’t understand. They said he was OK. Unbelievably this wasn’t a complication from the vein varix. Our baby had sepsis and jaundice. We weren’t allowed to hold him, feed him or even change his clothing. Instead, a gruelling 10 days of fighting began for our newborn.
Jaundice is quite a common condition in newborn babies and is usually harmless. However the Boss Baby had extremely high levels of bilirubin in his blood. Bilirubin is what causes jaundice and is a build up of a yellow substance in the blood which is produced by the red blood cells breaking down. Newborn’s livers are not fully developed so can not remove the bilibruin as effectively. Treatment is not usually needed but our little one had to have a treatment called phototherapy which is where he was placed under special halogen lights with a pair of sunglasses attached to his little head. His levels of bilibruin were monitored regularly but didn’t seem to be decreasing and so another treatment called fibreotic photography was tried where he lay upon a blanket of fibreotic cables so that the light was shining onto his back also. Still the levels were not dropping and words such as “blood transfusion” were starting to drift into consultations with the doctors and specialists. Thankfully my prayers were answered and the levels started to drop until he was finally out of the danger zone and could come off the lights, meaning I could hold him at last but only for short amounts of time.
The cute cooing noise I had noted turned out to be one of the symptoms of sepsis. It is described on the NHS as “grunting” type noises but in a baby so small, I wouldn’t have said it sounded like grunting with my baby but I would say it had quite a rhythm to it and was constant after a few hours (my experience) It was then I knew something wasn’t quite right. The tubes were giving him extra fluids and antibiotics through a drip which he stayed on for around 2/3 days. He wouldn’t take any milk and was fed through a drip.
Sepsis can develop rapidly so it is vital to spot the signs in new born babies. Without quick treatment it can lead to multiple organ failure and death. You should call 999 or go straight to A and E at the hospital if you notice any of the following in your under 5:
- Feeling abnormally cold to touch
- Looking mottled, bluish or pale
- Very lethargic or difficult to wake
- A rash that does not fade when u press it
- Fits or convulsions
- Making “grunting” noises with every breath
- Finding it harder to breathe than normal
- Seek urgent medical advice through NHS 111 of you notice the following:
- High temperature
- Babies under 1 month with no interest in feeding
- Not drinking for more than 8 hours
- No wet nappy for 12 hours
- Green, bloody or black vomit
- Soft spot on babies head bulging
- Baby feels floppy
- Eyes appear sunken
- Continuous crying or whining
- Non responsive or very irritable
- Stiff neck when looking up or down
I can never be sure if someone actually told me it was sepsis and I just blocked the words out or if I just read his notes myself and saw the words because it wasn’t actually until 5 days on the ward that I realised. Even then I never said it out loud and didn’t actually say he had sepsis until about 3 months after to the health visitor. I clearly remember telling the health visitor he was treated for sepsis but never before using those words. I can’t explain why I never spoke about it or used the actual words. I can see now that it was probably pretty evident that I was starting to show signs of post natal depression. Going through such a stressful pregnancy and then the shock of what happened after definitely took it’s toll on my mental health as well as being in a new area with no real support as we didn’t actually know anyone. I was terrified something would happen to my children and my anxiety was controlling my life. After speaking to the doctor about my feelings and anxiety I was prescribed a course of anti anxiety medication and soon felt better in myself.
Even today I have found writing this post about my son’s start in life, difficult. It was such a distressing, worrying time in our lives but thankfully he made a full recovery. Bringing him home was one of the happiest days for us and he has brought us so much joy ever since. Now celebrating his second birthday he is one of the liveliest, comical characters you will meet. Full of energy and happiness putting a smile on everyone’s face he meets.
Please if you have any concerns don’t delay to seek medical advice urgently. Information taken from the NHS website and further information about sepsis in all ages can be found here. https://sepsistrust.org