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Starting Life in a Special Care Baby Unit Mothers' Stories
Rebecca Edwards, Bedford, UK
and Joy Mottram, East Surrey, UK
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When our son Joe was born, blood taken from me at delivery showed that I had developed anti-rhesus antibodies despite being given anti-D injections (see box below). Any future pregnancies would need careful monitoring. It was likely that a second baby would become anemic as a result of those antibodies and might need to be delivered early, as well as being at risk of severe jaundice.

Rhesus disease prevention

Rhesus negative

Complications for a rhesus negative woman are more likely to occur in her second and subsequent pregnancies. The rhesus factor is a protein present or absent on the surface of human blood cells. If both parents are rhesus positive, then their babies will probably be rhesus positive too. If the mother is rhesus negative and the father is rhesus positive, then the baby is likely to be rhesus positive. If some of the baby’s rhesus positive blood mixes with the mother’s rhesus negative blood, the mother’s blood will start producing antibodies to the rhesus factor. If these antibodies get into the baby’s bloodstream before it is born, they can destroy its red blood cells, making the baby anemic. Such a mixing of the mother’s and baby’s blood is likely to occur in labor, especially if there is a cesarean section or manual removal of the placenta.

A first child usually escapes any problems as it is born before the antibodies have a chance to form, unlike subsequent babies. A "mopping up" injection (anti-D) is given after birth to the mother to destroy most of the remaining antibodies. Unfortunately, it is impossible to guarantee that they will all be removed. The level of antibodies in the mother’s blood is therefore carefully monitored. The level of antibodies is measured before birth as a way to determine whether or not labor needs to be induced or delivery brought forward, not to act as a trigger for anti-D treatment.

Apart from finding pregnancy while mothering a toddler very tiring, my second pregnancy was straightforward. I was given blood tests every two weeks to check the level of antibodies in my blood and scanned when the levels increased to see if the baby was showing signs of anemia. Because we always knew that early delivery was likely, we were happy when I reached 37 weeks and “term.” A scan showed that the baby was starting to become anemic, so I was booked for an induction of labor the next day.

starting-life-in-scbu

Rebecca Edwards

13 November. Holly was born at 37 weeks and three days by induction of labor. It was a fantastic birth experience and we had a couple of hours of lovely cuddles (including a first feed, which she managed all by herself) before she was taken to the special care baby unit (SCBU) for tests. She was gone for a long time and eventually we heard that they wanted to keep her there. I was upset as everything had seemed to be going so well. The staff wanted to see how much milk she was having and asked for permission to give her formula. I was not happy about that at all, but couldn’t see an alternative.

We were taken to the SCBU to see Holly. One of the nurses was attempting to give her a bottle and she didn’t seem keen to take it. She was handed to me to have a turn at bottle-feeding her. I found it very hard—she had seemed to be a natural at breastfeeding and I felt I was being told that I wasn’t good enough. This combined with her brother Joe not being allowed in to see her was just too much and I burst into tears.

starting-life-in-scbuHolly was put on a dextrose drip, as it was looking likely that she would need an exchange transfusion and needed to have nothing by mouth. In a way I was pleased with this development as it meant no more formula and gave me a chance to start expressing.

I had help hand expressing and at the first attempt got 2.7 ml. I was advised to express every three hours and I quickly learned to express with one hand and manipulate a syringe to collect the colostrum with the other. At 3pm Holly had a double exchange transfusion as her bilirubin (jaundice level) was so high, and was placed on triple phototherapy to try to control the jaundice. The transfusion helped and she tolerated it well, sleeping most of the time.

Jaundice & the Breastfed Baby

Jaundice

Jaundice in newborns is often a normal part of adjusting to life outside the womb, but occasionally jaundice is a sign of other more serious health problems. Jaundice is more common in premature babies, who need treatment to avoid serious health problems. Babies are born with more red blood cells than they need for life outside the womb. When these cells break down after birth, they produce a yellow pigment called bilirubin, which circulates in the blood. When bilirubin reaches the liver, it is changed into a form that can be transported to the intestines and passed out of the body in the baby’s feces. However, a newborn baby’s liver cannot process all the bilirubin at once. Excess bilirubin is deposited in the skin, muscles, and mucous membranes of the body, which creates a yellowish or golden appearance. Phototherapy uses blue-green lights to break down the bilirubin stored in a baby’s skin so that it can be eliminated more easily.

14 November. At 3am I was called to the SCBU to feed Holly. I was so excited. Holly was a bit sleepy but had a small feed. I felt reassured and the nurse put in her notes that she wasn’t to be given any more formula without checking with me. At 2pm Holly had a 40-minute breastfeed, and Ben managed to sneak a cuddle as well before the nurse came to put her back under the lamps. We were happy that things were looking positive, but at 5pm I was told that she was not to have any more breastfeeds for the time being because she might need another transfusion and she needed to spend as much time as possible under the lamps to keep the jaundice under control. Valid reasons perhaps but hard to accept. I asked for an electric breast pump.

starting-life-in-SCBU15 November. Going home without Holly was not a pleasant prospect, and I decided to stay at least overnight to see how she got on. It would be easier to express if I were nearby. I spent the day expressing milk and working on a cross-stitch picture for Holly’s bedroom wall—I needed to feel I was doing something for her. In the afternoon I moved to a side room and was grateful to have a bit more privacy. Holly’s tube-feeds were stopped in case she needed transfusing again, but by the evening her bilirubin level was stabilizing and overnight some of the phototherapy lamps were removed.

16 November. By 8am Holly was down to one UV lamp and the bilibed. Her bilirubin level was falling slightly, and the doctor said that if it continued to fall they would consider removing the other lamp and restarting feeds. At 4pm she was taken off the bilibed. I gave her a feed and she had an expressed milk top-up through her tube. Her dextrose drip was reduced as intake by mouth increased and I was asked to go back at 7pm to feed her again. I was interested to notice that Holly had a yellow stripe across her face where the bilimask covered her!

Although I was happy that Holly was making good progress, I was now starting to worry about the amount of time I’d been away from my little boy, Joe, and how hard this was for him. At 7pm the nurse decided not to give Holly the tube top-up feed. I felt a little nervous to be responsible for feeding her but her blood sugar was stable at her next feed so her tube was removed.

17 November. By 4am all lights and the drip had been removed. I had permission to go into the SCBU to feed Holly. Her bilirubin was still stable with no treatment. She had a short feed, fell asleep and would not wake. At midday she woke up hungry and I was called back to feed her again. Joe and Ben came to visit and it was lovely to all be together at last, and Joe said he would look after Holly. I was a bit unsure how he’d feel when she needed feeding, but I didn’t make a big thing of it, just got on with it, and he was fine. He’d seen babies breastfeeding in picture books, so he accepted that that’s what happens.

Suffering with engorgement, as I’d been expressing far more than Holly needed, I was tempted to go looking round the ward for other babies that looked hungry! I was tired of being in hospital and wanted to be with my family at home.

18 November. I woke Holly at 1am, and she fed on and off for an hour and a half. I didn’t want to let her go too long between feeds and risk the jaundice getting worse, so tried to make sure she didn’t go more than three hours without feeding—she made sure of that herself! Holly fed and slept, and I cross-stitched. I was desperate to get home to my son Joe who was finding it difficult without us.

19 November. Holly’s hemoglobin level was good and we were discharged in time to get fish and chips for dinner! Joe was excited to have Holly home.

Rebecca-E-Joe-and-HollyAt four weeks old, Holly was found to be anemic and had to have another blood transfusion. She was so brave throughout. I had to have Joe with me on the ward for the last couple of hours and despite being tired he was very well behaved. At the time of writing, Holly is four months old, still exclusively breastfeeding, and we are very proud of our gorgeous little girl.

STOP PRESS

Mother Joy Mottram gave birth by induction two days ago, in East Surrey, UK, to her fifth baby, a son with mild hemolytic disease of the newborn (HDN). HDN occurs when antibodies made by the mother bring about the destruction of red cells in the fetus and/or neonate.

Joy reports from the hospital:

The birth was induced to try to reduce the amount of time my blood had to cross over and for the antibodies to do damage to his red blood cells as my placenta started to break down. It means he’s got lots of immature cells taking up space and needs help to clear them, to keep the jaundice at bay, and to build new healthy cells.

All the staff have been massively supportive with breastfeeding and enabling skin-to-skin contact. First, they delayed clamping his cord and left me to rub him awake, hold him and feed him, before any of them touched him. He’s been with me since birth and there has been an infant feeding coordinator (lactation consultant) on the ward at all times.

starting-life-in-a-special-care-baby-unit

Joy Mottram

He has had to have phototherapy on the bilibed. His levels are now rising at a normal rate, though he is still not within the safety zone. He has had enough of being in the cot and will NOT be put down. After discussing what to do, including potential use of a biliblanket—not intensive enough—or waiting until morning, which was ruled out as that would give the jaundice an opportunity to take hold, the doctor came up with the following idea (see photo). I am in the cot under the lights with him. I am now the cot! And I can have Paracetamol [mild pain reliever and fever reducer, US: Tylenol] for the headache it might give me.

Editor’s note: Has anyone else come across this approach of allowing a mother to go under the lights with her baby? This is the first time I have ever heard of it.

 Resources
starting-life-in-a-special-care-baby-unit

Joy Mottram

Induced Birth

Jaundice & the Breastfed Baby

Premature Babies and Breastfeeding

The Power of Hand Expression


Comments

  1. […] Rebecca Edwards struggled to make breastfeeding work after starting life with her second baby in a Special Care Baby Unit and tells how she faced the challenges. Joy Mottram reports from hospital about the care her new […]

  2. […] English […]

  3. […] we welcomed our third child into our family, our sweet baby, Rose. She had a rocky start. I am rhesus negative and was carrying antibodies to the rhesus factor. Rose was in the NICU for three days after she […]

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