Samara, Conrad and Dominic levy
The Levy Family Story
It took my husband and I a year to become pregnant with Dominic. I found pregnancy quite heavy going physically, feeling very nauseous for a large part of it and I had gone off so many of the foods I would normally eat. Every day of my pregnancy I prayed that my baby would be healthy. My waters had started to trickle shortly after 37 weeks and with the support of the midwife running my antenatal classes, I chose not to be artificially induced. This was not a decision I took lightly but I just had a feeling that we should wait for the baby to come when it was ready. Every 2 hours I checked my pulse and temperature for any signs of infection and we had CTG’s to monitor the baby’s heart rate during this time. I also kept a daily kick chart monitoring the baby’s movement – there was no question that it was an active baby! All seemed well.
He was born on 29th August 2009 at 38 weeks. I cooked dinner for some friends the night before then started having contractions at around 2.30am. At quarter past nine that morning I had a water birth at home. It was a quick but intense birth that went smoothly with the help of six bottles of gas and air, and he looked like a completely healthy baby. I remember the elation I felt sitting in the birthing pool cuddling the most beautiful baby I had ever seen. His little blue eyes were wide open and blinking as soon as he came out of the water. He was so tiny and so perfect and he had a full head of dark hair. It was a few minutes before my husband thought to ask what the sex was – it didn’t seem important!
I tried to breast feed him shortly after he was born but he didn’t latch on. The midwife wasn’t concerned but said she would try to come back later in the day to see how we were getting on. For most of the day I lay in bed with Dominic lying on my chest feeling ecstatic. We dozed and cuddled and had lots of skin to skin contact to encourage breastfeeding but he didn’t seem to know how to do it.
The next day he was a little yellow and had still not latched on. The midwife who came was not worried about his colour but suggested that I manually express colostrum to give him from a syringe. It took about an hour to express one millilitre of colostrum and it was really difficult to get it all into his mouth without spilling it and I was worried about him gagging on it as he kept coughing when we tried to put it on his mouth. She also suggested that we might try giving him some formula from a syringe or cup just to get some milk into him if he wasn’t able to latch on. We tried a few times to use the cup and syringe but it just seemed to go everywhere and it was a real struggle getting the formula into him. A few people had told me that newborn babies don’t feed much in the first couple of days so I didn’t think there was a problem. I didn’t realise how important it was to get the milk into him bearing in mind he was becoming jaundiced. If I had I would have offered him milk in a bottle.
On day three he was more jaundiced and was a bit red and blotchy. My milk was starting to come in and he still hadn’t latched on. He had only had a minimal amount of formula as we found it hard to get it into him without him coughing and I was worried about it ending up in his lungs. He was sleeping more that day. We ventured out of the house for the first time for a short walk and I felt so happy and proud of my beautiful little baby. I was in a blissful baby bubble. When the midwife came she wanted us to go to the hospital for some blood tests and be seen by a doctor. She was concerned that he had an infection because of the delay between my waters breaking and going into labour. I was very emotional and I found it really hard not to cry on the way to the hospital wondering what might happen.
When we arrived at the hospital the registrar wanted to do a lumbar puncture. I panicked. Were they really querying meningitis? Was he really that sick? Was this all my fault? I was terrified by the prospect of my perfect, tiny baby having to have a needle in his tiny little spine and that he could really be that sick. I should mention that two months before this, a friend of mine had a baby girl who developed bacterial meningitis within 24 hours of being born. She nearly died and was left with brain damage and epilepsy (she is developing exceptionally well now). I was very affected by her experience and was beside myself worrying that this might happen to my precious little baby, and that it might be my fault.
I felt certain that the reason he wasn’t feeding was because he didn’t know how to latch on and I kept asking the staff for a bottle of formula to try. We hadn’t tried a bottle at home as all the advice when trying to breast feed was not to give a bottle but to use a cup or syringe. I hadn’t realised how important it was to get milk into him regularly at this stage otherwise I would have given him a bottle at home rather than let things get to this stage. The staff kept asking us to wait and I was starting to feel frantic about giving him a bottle of formula. I kept saying to the staff that I didn’t understand how he could be that poorly as he didn’t have a temperature, his pulse was in the normal ranges, his respirations were within the standard ranges and when he wasn’t sleeping he was alert and seemed well. I held his hand and cried while they took blood samples and cultures. It was awful letting the nurse take him away for the lumbar puncture – I didn’t want to let him out of my sight. I wanted to be there by his side, holding his hand every step of the way. The registrar tried twice to perform a lumbar puncture but was unable to get a usable sample as it was contaminated by blood.
They transferred us to a ward that night. His blood tests showed his billirubin was raised and his platelet count was just 8,000. It should have been at least 150,000. They started him with phototherapy for the jaundice and told me they would need to give him a platelet transfusion overnight. Finally they let me give him a bottle of formula and he drank every last drop. I felt so relieved. I was desperate to start expressing as, if he was poorly, it would be better for him to have breast milk than formula. I felt that this was the only thing that I had any control over and could do for him to try to help his through this. The nurse told me to go to sleep as it was late and I was shattered, and then to start expressing in the morning.
The next morning the consultant came to see us. Dominic had responded well to the platelet transfusion and they wanted to do another lumbar puncture to help them gain a diagnosis. She mentioned a rare disease that affects platelets and said they would need to take some blood samples from my husband and I, but stressed that it was a very rare disease. It didn’t seem as though that could be the answer. Eventually Dominic’s billirubin levels dropped low enough for him to stop having phototherapy. He had a cranial ultrasound which showed no abnormalities.
The next few days were a blur of emotion, blood tests, repeat lumbar puncture attempts which were still contaminated with blood, ultrasound and IV antibiotics. I was very emotional and was filled with guilt. My husband brought in some gifts and cards that people had sent for Dominic to try to cheer me up but I couldn’t open them until someone would tell me that he was going to be okay. His platelet count remained above 150,000 for a couple of days so they stopped checking his bloods and just continued with the IV antibiotics. He happily drank all my milk from a bottle but still showed no interest in latching on. He had had so many blood tests and cannulas that his tiny hands and feet were black and blue with bruises. His cannulas didn’t last more than a day or two before having to be replaced and he had to have IV antibiotics three times a day. Every blood test and cannula insertion was a traumatic experience that often reduced me as well as Dominic to tears. His blood cultures did not grow anything to suggest an obvious infection, his white cell count was acceptable, and the lumbar punctures contaminated with blood didn’t show anything obvious. I kept asking the doctors how he could be so sick when he seemed so well to me. The answers were always a bit vague.
Dominic seemed so well that after one week of IV antibiotics they let us go home for a while each afternoon as long as we came back for his 10pm dose of IV antibiotics. At home we would sit in the kitchen and have dinner with Dominic next to us in the Moses basket, and every evening I would feel tearful at having to go back to the hospital. On the fourteenth day of him being in hospital having antibiotics I couldn’t wait for him to have his last dose and be discharged. I desperately wanted to put it all behind us and try to start settling into family life. Those two weeks had felt like a lifetime. Before discharging us the medical team wanted to do one last set of bloods. When the results came back his platelet count was just 24,000. I was devastated. I just wanted to take my baby home and be with my husband, just the three of us. I couldn’t bear the thought of spending another minute in that hospital.
After some deliberation they let us go home for the night with instructions to come back the next day for another blood test. We went back the next day and his platelet count was 21,000. Finally they chased up my husband’s and my blood tests. We were at last given a diagnosis of Neonatal Alloimmmune Thrombocytopenia. We were told that this might affect any other children that we had. I asked about treatments for it and was told by the consultant that they weren’t aware of any antenatal treatments, just platelet transfusions once they were born. We have since found out that it is possible to treat this condition and the results are very promising.
Over the next few weeks we had numerous hospital visits to check his platelet count which gradually started to increase as my antibodies worked their way out of his system. I started searching medical journal articles and research papers to find out as much as I could. It took a long time to find up to date research that gave information about current treatments. I took the names of the doctors who seemed to be the most involved and whose studies showed the most promising results and contacted them directly. They were very helpful and gave me some contacts in the UK and I finally started to get some answers and information about how a future pregnancy would be treated.
When I look back I am glad that I did not agree to be induced. I would never recommend that anyone follow this path, it was very stressful and a very personal decision, but my gut instinct was to wait for him to come naturally, within reason. The statistics show that induced labours have a higher rate of assisted deliveries (use of forceps or ventouse etc). Many NAIT babies have sustained brain haemorrhages caused by the combination of a dangerously low platelet count together with the pressure on their head caused by the instruments designed to assist them out. If I had had an assisted delivery then Dominic could have been one of these babies.
We now have a beautiful, healthy little boy who is full of energy. My husband and I know that any children we have will be affected by this condition as we are in the 100% group. We also now know that when specialists are aware that a pregnancy is affected by this condition it is possible to treat it during pregnancy with IVIG with a very high success rate. As a result we are planning on trying for another little brother of sister for Dominic.