Robin's Story

Premature boy now four years old.

By Anne-Mieke

I live in the Netherlands. On May 30, 1996 our son Robin was born at 26 weeks and 2 days of gestation.

Robin was premature because of incompetent cervix caused by exposure to D.E.S. during my mother's pregnancy of me. D.E.S. was used in the 60's to prevent miscarriages, but turned out to cause health problems for the baby girls who were born. One of these problems is not being able to carry a baby to term.

The night before he was born, I was restless and had some stomach pains but according to the doctors, I had had no contractions. I decided to call my husband Eric and it's a good thing I did because at 7:30am my membranes ruptured and our son Robin was born. All of this took about three minutes so we were a bit surprised! (The understatement of the year...)

Luckily, he started to cry his little lungs out and he even scored 9 points on all his Apgars. He weighed 900 grams and was 35 cm long. They had to create a place for him at the NICU because it was extremely busy and there was a risk they might have to take him to another hospital. One of the baby's at unit 2 was promoted to High Care and Robin could take his place.... A thing that would happen a lot during our stay at Unit 2.

Before he was moved to Intensive Care, I got to see him for a while and I was able to touch his hand. That afternoon I was wheeled into NICU and Eric and I had our first introduction to scrubbing up again and again. Robin was in a state-of-the-art incubator, hooked up to all sorts of IV's and machines and he looked so small and fragile, but of course he was the most handsome guy in NICU! He had an Elvis Presley hairdo and looked so cute with his black hair and little side-burns. We decided to baptize him that day, even though he was doing very well. It was important for us to do that in peace and if he got sick, we wouldn't have to do this in a hurry.

Robin was breathing with the help of a NPT. I think this is a bit like the CPAP. The NPT is a short tube in his nose which helps to keep his lungs open so he doesn't have to work so hard when he's breathing.

In the first week, we were introduced to the early intervention program which is running on a trial basis in Rotterdam. Eric and I decided to join that program and it was the best decision we made that week.

The first eight weeks of his life were a rollercoaster ride. He would do fine, one hour and the next, he would be on the respirator having an infection or some other problem. Some of the problems were: BPD, infections, an open Ductus Botalli (the vein between a baby's heart and lungs which should close after birth) and lots of Apnea and Bradycardia. He was on the respirator for about two weeks but he needed a drug called Dexamethasone to get of the respirator. One of the side effects of this drug is weakening of the immune system and of course he got another infection.

The nurses allowed us to hold him whenever Robin's condition would allow it (Kangaroo style) and when we did he had no Apnea or Brady. Sometimes the alarms were so silent they let him sit with us for 90 minutes instead of 20 minutes. When he was doing better, we could hold him every day and he sometimes even tried to nurse...

When he was about 9 weeks old he could breathe without the assistance of the NPT and he was promoted to High Care. We were very happy about that, but that afternoon, we had a talk with the doctor and he told us Robin had ROP (Retinopathy of Prematurity) in stage 2. He couldn't answer any of our questions and was the old tale again: one step forward two steps back.... One of the other doctors came to congratulate us for Robin's promotion to High Care and we told him about the ROP. He was just great in explaining everything about ROP we had wanted to know.

The next two weeks everything went very fast. We were allowed to bathe Robin. He tried his first bottle and within two weeks he was transferred to our local hospital. That was quite a change for us and to be honest, we gave the doctors and nurses a hard time. We knew a lot about Robin, his treatment and most of all, what he could and could not handle because of the early intervention program. They had made video's of Robin, given us advice on how to take care of him and most of all, they had given us the self-confidence that we knew what was best for Robin. So whenever we felt something happened that Robin couldn't handle, we would call a doctor or nurse and tell them so.

On September 4th, my due date, we could take him home. He had been in the hospital for 96 days. When he came home, he weighed almost 3000 grams and he even fitted in a normal baby's clothes size. Having him home was very exciting. We hadn't told anyone we were going to pick him up. The first night we didn't sleep at all. If he made any noises, we would check on him. But if he was silent for ten minutes, we would check him also.

At 7 months old he weighed 6800 grams and is 64 cm long. The pediatrician was very satisfied with him. He seems to have developed very well and most important, he was relaxed, friendly baby who laughs a lot, eats good and doesn't need to be checked up on so often like the first couple of months he was home.

When Robin was 23 months old the neonatologist and his pediatrician agreed he was caught up completely and need no further follow up.... we were of course thrilled to hear this. Robin was sick alot, he seemed to catch every respiratory infection that went around that winter. He grew into a happy, outgoing toddler, who invents a new way to give his mom and dad grey hairs everyday. At his second birthday we really enjoyed the fact that our little man achieved so much in just two years, and he had a ball unwrapping all the presents.

Robin started preschool when he was three. At four years old he has started school. He did great from day one and is making the most wonderful works of art any mommy could wish for. We also took Robin to the circus for the very first time, he was so impressed with the horses, the clowns, the elephants and the general atmosphere.